Configuring Health Consumers: Health Work and the Imperative of Personal Responsibility (Health Technology and Society)

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10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Configuring Health Consumers

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

Health, Technology and Society Series Editors: Andrew Webster, University of York, UK and Sally Wyatt, Royal Netherlands Academy of Arts and Sciences, The Netherlands

Ellen Balka, Eileen Green and Flis Henwood (editors) GENDER, HEALTH AND INFORMATION TECHNOLOGY IN CONTEXT Gerard de Vries and Klasien Horstman (editors) GENETICS FROM LABORATORY TO SOCIETY Societal Learning as an Alternative to Regulation Alex Faulkner MEDICAL TECHNOLOGY INTO HEALTHCARE AND SOCIETY A Sociology of Devices, Innovation and Governance Herbert Gottweis, Brian Salter and Catherine Waldby THE GLOBAL POLITICS OF HUMAN EMBRYONIC STEM CELL SCIENCE Regenerative Medicine in Transition Roma Harris, Nadine Wathen and Sally Wyatt (editors) CONFIGURING HEALTH CONSUMERS Health Work and the Imperative of Personal Responsibility Jessica Mesman MEDICAL INNOVATION AND UNCERTAINTY IN NEONATOLOGY Nadine Wathen, Sally Wyatt and Roma Harris (editors) MEDIATING HEALTH INFORMATION The Go-Betweens in a Changing Socio-Technical Landscape Andrew Webster (editor) NEW TECHNOLOGIES IN HEALTH CARE Challenge, Change and Innovation Forthcoming titles include: John Abraham and Courtney Davis CHALLENGING PHARMACEUTICAL REGULATION Innovation and Public Health in Europe and the United States

Health, Technology and Society Series Standing Order ISBN 978–1–4039–9131–7 hardback (outside North America only) You can receive future titles in this series as they are published by placing a standing order. Please contact your bookseller or, in case of difficulty, write to us at the address below with your name and address, the title of the series and the ISBN quoted above. Customer Services Department, Macmillan Distribution Ltd, Houndmills, Basingstoke, Hampshire RG21 6XS, England

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Titles include:

Health Work and the Imperative of Personal Responsibility Edited by

Roma Harris The University of Western Ontario, Canada

Nadine Wathen The University of Western Ontario, Canada

and

Sally Wyatt Virtual Knowledge Studio, Royal Academy for Arts & Sciences, The Netherlands

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Configuring Health Consumers

Selection and editorial matter © Roma Harris, Nadine Wathen and Sally Wyatt 2010 Individual chapters © their respective authors

No portion of this publication may be reproduced, copied or transmitted save with written permission or in accordance with the provisions of the Copyright, Designs and Patents Act 1988, or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency, Saffron House, 6-10 Kirby Street, London EC1N 8TS. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The authors have asserted their rights to be identified as the authors of this work in accordance with the Copyright, Designs and Patents Act 1988. First published 2010 by PALGRAVE MACMILLAN Palgrave Macmillan in the UK is an imprint of Macmillan Publishers Limited, registered in England, company number 785998, of Houndmills, Basingstoke, Hampshire RG21 6XS. Palgrave Macmillan in the US is a division of St Martin’s Press LLC, 175 Fifth Avenue, New York, NY 10010. Palgrave Macmillan is the global academic imprint of the above companies and has companies and representatives throughout the world. Palgrave® and Macmillan® are registered trademarks in the United States, the United Kingdom, Europe and other countries. ISBN-13: 978–0–230–25196–0 hardback This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources. Logging, pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. Library of Congress Cataloging-in-Publication Data Configuring health consumers : health work and the imperative of personal responsibility / edited by Roma Harris, Nadine Wathen, Sally Wyatt. p. cm. — (Health technology and society) ISBN 978–0–230–25196–0 (hardback) 1. Medical policy. 2. Self-care, Health. 3. Medical informatics. 4. Social medicine. I. Harris, Roma M. II. Wathen, C. Nadine, 1968– III. Wyatt, Sally, 1959– RA393.C655 2010 362.1—dc22 2010027522 10 9 8 7 6 5 4 3 2 1 19 18 17 16 15 14 13 12 11 10 Printed and bound in Great Britain by CPI Antony Rowe, Chippenham and Eastbourne

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

August 28, 2010 11:52

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All rights reserved. No reproduction, copy or transmission of this publication may be made without written permission.

List of Abbreviations and Acronyms

vii

Acknowledgements

viii

Series Editors’ Preface

ix

Notes on the Editors and Contributors

xi

1 Health(y) Citizenship: Technology, Work and Narratives of Responsibility Sally Wyatt, Roma Harris and Nadine Wathen

1

Part I 2 In Sickness and in Health: Public and Private Responsibility for Health Care from Bismarck to Obama Leslie Bella

13

3 Power to the Patient? A Critical Examination of Patient Empowerment Discourses Tiffany Veinot

30

Part II 4 Lay Knowledge: The Missing Middle of the Expertise Debates Sarah Wilcox 5 The Rhetorical Work of Informed Choice in Midwifery: Situated Knowledges and the Negotiation of Health Care Decisions Philippa Spoel 6 Empowerment, Compliance and the Ethical Subject in Dietetic Work Jacqui Gingras and Lucy Aphramor

45

65

82

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Contents

vi Contents

94

Part III 8 Facilitating Patients’ Hope Work Through Relationship: A Critique of the Discourse of Autonomy Pär Salander and Clare Moynihan 9 The Work of Clinical Communication in Cancer Care Peter Salmon 10 Working for the Cure: Challenging Pink Ribbon Activism Maya Goldenberg

113 126 140

Part IV 11 Impatient on the Net: Exploring the Genres of Internet Use for Health Maria Bakardjieva

163

12 Sourcing the Crowd for Health Experiences: Letting the People Speak or Obliging Voice Through Choice? Samantha Adams

178

13 Working (IT) Out Together: Engaging the Community in E-Health Developments for Obesity Management Flis Henwood, Leslie Carlin, Elizabeth S. Guy, Audrey M. Marshall and Helen Smith

194

14 Working to be Healthy: Empowering Consumers or Citizens? Roma Harris, Nadine Wathen and Sally Wyatt

211

Bibliography

225

Author Index

256

Subject Index

262

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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7 Disorder Construction as Lay Work: Examining the Relationship Between Sleep Paralysis Construction and Help-Seeking Behaviours Corinne Weisgerber

AALL AIDS AVN BMI BWHBC C CANARIE CCF CNA CPR DH DHHS EPP GDP HIAA ICTs ISP MCO MM MMR NDP NHS NPH NPM OECD PCM PPS REM RSI SM SP WHO

American Association for Labor Legislation acquired immunodeficiency syndrome avascular necrosis or osteonecrosis body mass index Boston Women’s Health Book Collective client Canadian Network for the Advancement of Research, Industry and Education Cooperative Commonwealth Federation Community Nutrition Assistants cardiopulmonary resuscitation Department of Health (UK) Department of Health and Human Services (UK) Expert Patients Programme (UK) gross domestic product Health Insurance Association of America information and communication technologies isolated sleep paralysis managed care organization main midwife measles, mumps, rubella New Democratic Party National Health Service (UK) new public health New Public Management Organisation for Economic Cooperation and Development patient-centred medicine Prospective Payment System rapid eye movement repetitive strain injury student midwife sleep paralysis World Health Organization

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List of Abbreviations and Acronyms

All of the chapters in this book were originally papers presented at a Workshop funded by the Social Sciences and Humanities Research Council of Canada (Aid to Research Workshops and Conferences in Canada) and hosted by the editors at The University of Western Ontario in London, Canada in May 2009. Participants were invited to the workshop on the basis of their scholarly work and its relation to the challenging nexus of issues arising from the promotion of health consumerism and personal responsibility for health in the context of rapidly changing information and communication technologies (ICTs). They were encouraged to reflect on the themes of consumerism, selfcare, empowerment and information technologies as they relate to health(y) citizenship. To provide a forum for the exchange of ideas and feedback, and to ensure a multi-disciplinary approach to exploring these issues, each participant was asked to review and present the paper of another participant—we thank our contributors for agreeing to do this work and taking that risk. We also thank Workshop participants Hugh Armstrong and Pat Armstrong, and student moderators Selinda Berg, Jenna Brady, Kathy Ellis, Jill McTavish and Holly Witteman. The Workshop resulted in a book that we hope delivers a high degree of integration among chapters, as well as thorough exploration of our main themes from a variety of perspectives. We would like to thank the contributors to this book for their thoughtful contributions as well as for their responsiveness to our queries and proddings. We would also like to thank Andrew Webster, one of the editors of the Health, Technology and Society series, for his prompt and encouraging responses. The efforts of the staff at Palgrave Macmillan in seeing this book though to its present form are also greatly appreciated. We are also grateful to the Faculty of Information and Media Studies at The University of Western Ontario and the Royal Netherlands Academy of Arts and Sciences for their financial support of this project.

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Acknowledgements

Medicine, health care and the wider social meaning and management of health are undergoing major changes. In part, this reflects developments in science and technology, which enable new forms of diagnosis, treatment and the delivery of health care. It also reflects changes in the locus of care and burden of responsibility for health. Today, genetics, informatics, imaging and integrative technologies, such as nanotechnology, are redefining our understanding of the body, health and disease; at the same time, health is no longer simply the domain of conventional medicine, nor the clinic. More broadly, the social management of health itself is losing its anchorage in collective social relations and shared knowledge and practice, whether at the level of the local community or through state-funded socialised medicine. This individualisation of health is both culturally driven and state sponsored, as the promotion of ‘selfcare’ demonstrates. The very technologies that redefine health are also the means through which this individualisation can occur—through ‘e-health’, diagnostic tests and the commodification of restorative tissue, such as stem cells and cloned embryos. This Series explores these processes within and beyond the conventional domain of ‘the clinic’, and asks whether they amount to a qualitative shift in the social ordering and value of medicine and health. Locating technical developments in wider socio-economic and political processes, each text discusses and critiques recent developments within health technologies in specific areas, drawing on a range of analyses provided by the social sciences. Some will have a more theoretical, others a more applied focus, interrogating and contributing towards a health policy. All will draw on recent research conducted by the author(s). The Health, Technology and Society Series also looks towards the medium term in anticipating the likely configurations of health in advanced industrial societies and does so comparatively, through exploring the globalisation and the internationalisation of health, health inequalities and their expression through existing and new social divisions. This volume contributes to the Series through its explicit focus on how developments in technology facilitate changes in the locus of care ix

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Series Editors’ Preface

Series Editors’ Preface

and burden of responsibility for health. It explores the tensions between the social management of health, traditionally anchored in collective social relations and shared knowledge and practice, whether at the level of the local community or through state-funded socialised medicine, and the individualisation of health through the culturally driven and state-sponsored promotion of ‘self-care’. Contributors to the book seek to move beyond the conventional domain of ‘the clinic’ and locate technical developments in wider socio-economic and political processes. Different chapters examine how members of the public have come to be positioned as health ‘consumers’ and what this means for the distribution of health-related work. They provide various examples of the marketisation of health care and the technologies that are used to mediate or enable the everyday ‘health work’ of citizens. They examine the shifting meaning of health ‘expertise’ and describe the ways in which people comply with, alter or resist the health ‘jobs’ they are assigned or take on new, unassigned healthwork roles. Overall, the editors and contributors argue that health systems should enable a form of ‘empowerment’ in which people support one another, using the technologies available, to learn about, act upon and engage with others to live healthy lives and, when ill, receive necessary care. Andrew Webster and Sally Wyatt

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x

The editors Roma Harris is Professor in the Faculty of Information and Media Studies at The University of Western Ontario in London, Canada. She has written about the impact of technological change on women’s work in libraries and has been involved in a number of studies of help information-seeking by abused women. Currently, her work focuses on health information seeking behaviour. She was the lead investigator for the ‘Rural HIV/AIDS Information Networks Project’ funded by the Canadian Institutes of Health Research and co-editor, with Nadine Wathen and Sally Wyatt, of Mediating Health Information: The Go-Betweens in a Changing Socio-Technical Landscape (Palgrave Macmillan, 2008). Email: [email protected] Nadine Wathen is Associate Professor in the Faculty of Information & Media Studies at The University of Western Ontario, in London, Ontario, Canada. She holds a Canadian Institutes of Health ResearchOntario Women’s Health Council New Investigator Award to support her research, which examines women’s health decision-making, including intervention research in the area of violence against women; projects to translate and mobilize research evidence in women’s health to policy and practice, and projects on how people seek and use health information. Email: [email protected] Sally Wyatt is Professor of Digital Cultures in Development at Maastricht University and a senior research fellow with the Virtual Knowledge Studio for the Humanities and Social Sciences, Royal Netherlands Academy of Arts and Sciences. Her research focuses on the relationship between technological and social change, focusing particularly on issues of social exclusion and inequality. She has been president of the European Association for the Study of Science and Technology (2000–2004). She has edited (with Flis Henwood, Nod Miller and Peter Senker) Technology and Inequality: Questing the Information Society (Routledge, 2000). Email: [email protected] xi

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Notes on the Editors and Contributors

xii Notes on the Editors and Contributors

Samantha Adams is Assistant Professor in the Department of Health Policy and Management, Erasmus University Medical Centre in Rotterdam, The Netherlands. Her primary research concerns the use of internet and web-based technologies in health care, particularly how patients and other lay persons search for and evaluate on-line healthrelated resources. Her current research looks at the added dimension of web 2 applications and how individuals produce information for others. Examples of her publications include, ‘Looking for Answers, Constructing Reliability: An Exploration into how Dutch Patients Check Web-Based Medical Information’, International Journal of Medical Informatics, 2007, 75(1), 66–72. Email: [email protected] Lucy Aphramor is Honorary Research Fellow in the Applied Research Centre in Health and Lifestyle Interventions at Coventry University, UK, and a registered dietitian working with an NHS cardiopulmonary team. Her practice and research focus on developing and delivering care approaches that reorient services towards more socially integrated and politicised models of health and well-being. Email: [email protected] Maria Bakardjieva is Professor and Division Head, Communication, Faculty of Communication and Culture, at the University of Calgary in Alberta, Canada. She has written extensively on the social aspects of information technology, including computer-mediated communication and she is the author of Internet Society: The Internet in Everyday Life (Sage, 2005). Although she has not focused specifically on health issues, her concept of the ‘warm expert’ is particularly relevant to understanding IT-mediated communications. Email: [email protected] Leslie Bella is Honorary Research Professor in the School of Social Work at Memorial University of Newfoundland in Canada. Her social work practice and research focus on marginalised populations. Her research has focused on caring labour in a variety of community contexts, in formal health care and within the family. Most recently, she has been working for the Labrador Inuit Association to develop a curriculum for educating aboriginal social workers. Email: [email protected] Leslie Carlin is a research fellow in Primary Care and Public Health at the Brighton and Sussex Medical School, England. She is a nutritional

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Contributors

Notes on the Editors and Contributors

xiii

Jacqui Gingras is Assistant Professor in the School of Nutrition at Ryerson University in Toronto and a Registered Dietitian with the College of Dietitians of Ontario, Canada. Her research is concerned with the intersections of health communication, food work, constructions of healthy eating, critical dietetics and health professional education. Her writing appears in Food, Culture & Society, Feminist Media Studies, Journal of Agricultural and Environmental Ethics, Canadian Journal of Dietetic Practice and Research and the Journal of the American Dietetic Association. She is a member of the Advisory Committee for Professional Affairs (Dietitians of Canada). Email: [email protected] Maya Goldenberg is Assistant Professor in the Department of Philosophy & Bachelor of Arts and Science Program at the University of Guelph in Canada. Her background is in the philosophy of medicine and science, particularly theories of evidence, the body, women’s health and bioethics. Her recent projects have involved investigations into the epistemological and ethical considerations and concerns regarding the evidence-based medicine. Examples of her publications include ‘On Evidence and Evidence Based Medicine: Lessons from the Philosophy of Science’, Social Science & Medicine, 2006, 62, 2621–2632. Email: [email protected] Elizabeth S. Guy is a senior lecturer in digital media in the School of Computing, Mathematical and Information Sciences at the University of Brighton, UK. Her background is computer-supported cooperative work and design ethnography. Her research interests focus on the study of how computer artefacts mediate collaborative human activity and the implications for design. Most recently she has worked as a researcher on the Net.Weight project, looking at the potential of computer technologies to support weight management. Email: [email protected] Flis Henwood is Professor of Social Informatics in the School of Computing, Mathematical and Information Sciences at the University of Brighton in the UK, where she heads the Social Informatics Research Unit. Her most recent work focuses on the implementation and use of

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and medical anthropologist who has conducted research on childhood malnutrition in Indonesia, on food and health in the UK and on the social aspects of digitised medical images. Her recent work has focused mainly on the intersection of information technology, health care and medical practice. Email: [email protected]

xiv

Notes on the Editors and Contributors

Audrey M. Marshall is a senior lecturer in the School of Computing, Mathematical and Information Sciences and a member of the Social Informatics Research Unit at the University of Brighton in the UK. She has worked in a range of library and information sectors, including public libraries and health information services and is an active member of CILIP, the professional body for library and information specialists in the UK. Her research interests revolve around the uses of information and information and communication technologies for health, focusing particularly on information literacy in a public health context. Examples of her publications include, ‘Information to Fight the Flab: Findings from the Net.Weight Study’ in The Journal of Information Literacy, 2009, 3(2), 39–52. Email: [email protected] Clare Moynihan is a medical sociologist and Senior Research Fellow and Research Associate at the Institute of Cancer Research and The Royal Marsden NHS Foundation Trust. She has worked within and between the Academic Department of Radiotherapy and The Department of Psychological Medicine, studying the psycho-social aspects of men with cancer. This has led her to look at the concept of ‘cure’ for relatively young testicular cancer patients, the ways in which that group responds to a psychological intervention, and the ways in which young men perceive long-term follow up. Recently her work has led to the genetic field where she has worked with men with prostate cancer. She is particularly interested in the concept of gender and the methodological approaches that might capture this neglected area of men’s and women’s experience of the disease. Email: [email protected] Pär Salander is Professor in the Department of Social Work, Umeå University, Sweden. As a practicing psychologist and researcher who specialises in the psychosocial aspects of cancer, he has worked with cancer patients to explore what they expect from communications with their doctors and is currently studying the decision process around reconstructive surgery in breast cancer. Examples of his publications include ‘Severely Diseased Lung Patients Narrate the Importance of Being Included in a Helping Relationship’, Lung Cancer, 2005, 50(2), 155–162. Email: [email protected]

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information and communication technologies in health care. She has published widely on e-health issues and is co-editor, with Ellen Balka and Eileen Green, of Gender, Health and Technology in Context (Palgrave Macmillan, 2009). Email: [email protected]

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Peter Salmon is Professor of Clinical Psychology at the University of Liverpool and a consulting psychologist in oncology care in two UK hospitals. He has published extensively about health communication and is well known for his research on how cultural and political factors influence the negotiation of responsibility for physical illness and its management between health practitioners and users. Examples of his publications include, ‘Patient Empowerment and Control: A Psychological Discourse in the Service of Medicine’, Social Science and Medicine, 2003, 57(10), 1969–1980. Email: [email protected] Helen Smith is Professor of Primary Care at Brighton and Sussex Medical School in the UK. She has dual accreditation in general practice and public health medicine and has experience of working in academic, hospital and general practice settings both in the UK and Canada. Her work focuses on improving the evidence base for primary health care. She has been instrumental in the development of research networks to increase research and development capacity of health care providers. Her research focuses on the evaluation of new technologies in primary care. Email: [email protected] Philippa Spoel is Associate Professor of English at Laurentian University, Canada. Her interests include expert–lay communication, the public reconstruction of science, women’s health discourses and the situated negotiations of dominant neo-liberal health discourses by health providers and recipients. She has an ongoing research program concerning the rhetoric of informed choice policies and practices in Canadian midwifery and she also studies the rhetorical processes of knowledgemaking and public engagement in environmental risk communication. Examples of her publications include, ‘Midwifery, Consumerism, and the Ethics of Informed Choice’ in P.L. Twohig and V. Kalitzkus (eds.), Bordering Biomedicine:Interdisciplinary Perspectives on Health, Illness, and Disease, (Rodopi Publications, 2006). Email: [email protected] Tiffany Veinot is Assistant Professor in the School of Information, with a cross-appointment at the University of Michigan’s School of Public Health, Department of Health Behavior and Health Education. Her research focuses on understanding health information exchange within communities; illuminating collaborative health information behaviour in everyday life; investigating health information service models for marginalised populations; and conducting socio-cultural studies of health information technologies, policy and practice. Examples of her

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Notes on the Editors and Contributors

xvi

Notes on the Editors and Contributors

Corinne Weisgerber is Assistant Professor of Communication at St. Edward’s University in Austin, Texas. Her recent research focuses on electronic health communication and on the role of the internet in the construction of illness. Her other research interests include social media, communication pedagogy and communication assessment. Examples of her publications include, ‘Turning to the Internet for Help on Sensitive Medical Problems’, Information, Communication and Society, 2004, 7(4), 554–574. Email: [email protected] Sarah Wilcox is Assistant Professor, Department of Sociology, Sarah Lawrence College in New York. She is interested in interactions between experts, lay people and social movements. Currently, she is working on a project called ‘Claiming Knowledge: Gay Communities, Science, and the Meaning of Genes’ in which she explores how ideas about biology and sexuality have been produced, circulated, contested and negotiated within and outside science. Examples of her publications include, ‘Cultural Context and the Connections of Science Journalism: Drama and Contradiction in Media Coverage of Biological Ideas about Sexuality’, Critical Studies in Media Communication, 2003, 20(3), 225–247. Email: [email protected]

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publications include, ‘Interactive Acquisition and Sharing: Understanding the Dynamics of HIV/AIDS Information Networks’, Journal of the American Society for Information Science and Technology, 2009, 60(11), 2312–2332. Email: [email protected]

Health(y) Citizenship: Technology, Work and Narratives of Responsibility Sally Wyatt, Roma Harris and Nadine Wathen

As health care costs continue to rise, public health policy in advanced industrialised countries increasingly emphasises the importance of citizens’ personal responsibility for their own health. Strategies to encourage members of the public to lessen their reliance on traditional forms of health care are often entangled with the introduction of new technologies that are intended to facilitate better access to health information and enable opportunities for self-care. New service delivery models based on primary health care provided in the community by multidisciplinary health care teams and supported by home-based health care programmes have emerged hand-in-hand with discourses of ‘patientcentred care’, ‘shared decision making’, ‘consumer health information’ and patient ‘autonomy and empowerment’. Understanding these discourses and their social implications is important because: the ways in which we conceptualize and speak and write about health are never just about health; they also function as repositories and mirrors of our ideas and beliefs about human nature and the nature of reality, as well as about the kind of society we can imagine creating and how best to achieve it. (Robertson, 1998, p. 155) The contributors to this book explore the assumptions that underpin the idea of personal responsibility for health, consider how they attach to changing information technologies and discuss their influence on emerging forms of health ‘work’, especially the often invisible healthrelated work increasingly expected of private citizens as an add-on to domestic life. 1

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Health(y) Citizenship

‘Empowerment’ and ‘consumerism’ are two of the central concepts embedded in the narrative of personal responsibility. Providing health information, especially via the internet, through e-health initiatives such as government-financed health web portals, is expected to ‘empower’ members of the lay public (often described as consumers) not only to participate more actively in their own care, but also to take more responsibility for their health-related decisions (even those as significant as selecting treatment options). Information delivered via health promotion programmes is also expected to result in behaviour changes, specifically, the adoption of ‘healthier lifestyles’, including improved dietary habits and avoidance of risky activities, such as smoking and excessive sun tanning, that are intended to improve public health and reduce health care costs. Other examples of strategies intended to empower health system consumers include training patients to ask their doctors more questions, teaching patients to ‘self-manage’ chronic illnesses, providing family members with results of genetic testing for heritable health conditions and encouraging the home use of selfmonitoring equipment ranging from relatively ‘simple’ devices such as blood glucose monitors to machines as complex as ambulatory ECG recorders to diagnose irregular heart rhythm (Oudshoorn, 2008). The impact of these ‘empowering’ strategies is not always clear. Indeed, the very idea that most people want to be empowered is open to question. Not all patients want to be in control of their health care (Salmon and Hall, 2004) and, in some situations, the delivery of information per se may be less important to patients and their families than expressions of ‘care’ in their relationships with health service providers (Salander and Henriksson, 2005). It is also not clear that personal control actually yields positive health benefits. For instance, there is little evidence to demonstrate that improved access to health information (in any format or via any medium) actually ‘empowers’ patients or that ‘empowered’ patients take better care of their health. Rodmell and Watt (1986) are critical of health education programmes that ‘pathologise typical conduct’, a practice they refer to as ‘lifestyleism’, in which there is a failure to recognise the limitations of the concept of consumer ‘choice’ in health. They argue that ‘the giving of knowledge by professionals to clients is not enough in itself to facilitate choice’ and that ‘the making of a “free choice” does not necessarily equate with a “healthy choice” and nor does this necessarily equate with “health” ’ (p. 6). This is worrying given that the idea of the informed and empowered patient has been promoted as a means to assign greater responsibility for treatment outcomes to patients, thereby lessening the burden of

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Sally Wyatt, Roma Harris and Nadine Wathen 3

Visible and invisible health work: Effects of technology and policy A distinctive contribution of this book is to bring together recent discussions about health-related self-care and empowerment with developments in the sociology of work to make visible the restructuring of formal and informal, material and immaterial health-related labour. The nature of work is a topic that seems to move in and out of fashion within academia, though work itself (and/or the absence of it) remains crucial to economic and political functioning as well as individual identity and well-being. We do not review the long history of debates about technology and work (which can be dated back to Marx and earlier), nor dwell on the continuing battles between the health professions over the control of domains of work in the health sector, but rather we focus on the ways in which ‘immaterial’ labour (Hardt and Negri, 2000) is evolving as a result of the pressure to reduce costs through strategies such as sending some health labour home. Thus, a central theme in this book is that of health ‘work’ particularly work that arises from the emphasis on personal responsibility for health, as a result of which citizens are expected to perform additional, and, in some cases new, health-related tasks. This work, at times enabled by new technologies, is often invisible, frequently assigned (explicitly or implicitly through new structures and work arrangements) to particular actors (often women) and positioned as the obligation of individual citizens rather than the collective responsibility of communities, or society as a whole. Immaterial labour, introduced in Marx’s Theory of Surplus Value (1861– 1863), refers to labour practices in which the product is not separable from the act of production. Marx gives the examples of teachers, artists, priests and doctors. In Hardt and Negri’s account (2000), immaterial labour refers to information processing or conceptual work such as problem solving and/or symbolic manipulation, found in activities such as media production, web design, marketing and the like. Other recent theoretical descendants of Marx’s concept can be recognised in Bourdieu’s (1986) notion of social capital, Foucault’s (1976/1998) idea of biopower as well as in Terranova’s (2004) reflections on the role of free labour in

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responsibility (and liability) on health service providers (see Kemper and Mettler, 2002). Furthermore, not all health service providers support the idea that patients should control their own health care and some question whether it makes sense to position citizens as ‘lay medical experts’, a term which could be considered an oxymoron (Prior, 2003).

Health(y) Citizenship

the production of digital content. It is also to be found in contemporary feminist studies, which has expanded the concept of immaterial labour to the areas of domestic life, biological reproduction and sex work (Fortunati, 2007), and to understand changes in academic work (Antonijevic et al., forthcoming; Gill, 2010). It is important for this book because it draws attention to the ways in which work, such as health care, that has historically been outside capitalist relations of production is increasingly subject to market relations, with important consequences for relationships between patients and those who treat or otherwise care for them, as well as between different groups of health care professionals and administrators. In order to make the concept of immaterial labour meaningful in this context, we draw on other concepts in the sociology of work. Star and Strauss (1999) introduce the concept of invisibility to portray ‘the ecology of visible and invisible work’, arguing however that ‘no work is either inherently visible or invisible’ (p. 1). They identify three ways in which invisibility of work is achieved: creating a non-person; disembedding background work; and abstracting and manipulating indicators. Creating a non-person refers to those situations in which the product of the work is visible but the worker is invisible—for example, cleaning in domestic and other settings. The people who do the cleaning are often invisible—arriving late at night or early in the morning; but the result of their labour is visible to all. Disembedding background work is almost the reverse—the workers are quite present but (some of) the work they do is relegated to the background. For example, nurses are very visible in hospitals but much of the work they do in looking after patients is taken for granted. Abstracting and manipulating indicators refers to the ways in which formal indicators are used to make certain tasks invisible or ‘not count’. For example, when productivity is quantified by measures such as the number of patients bathed in an hour, some of the associated tasks of caregiving become invisible, such as expressing concern or passing on information through informal conversation. The concept of invisible work has been used to powerful effect in analyses of health care work (Mesman, 2008; Mort et al., 2003) and in computer-supported cooperative work (CSCW) (Schmidt and Simon, 1996; Suchman, 1987). Much of the literature on health care focuses on the invisible work of low paid medical support staff, such as nurses, and even lower paid ancillary workers, such as cleaners. More recently, the invisible work of patients and the family and friends who care for them has received more attention (Harris, 2009; Oudshoorn, 2008). CSCW

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research draws upon earlier studies by Strauss (1985) who focused on actual work practices and their task division rather than on the social division of labour. Star and Strauss (1999) caution against attempts to make everything visible, to formalise all work, arguing that there are good reasons for some work to remain invisible. For example, those involved in the caring professions may elect to attend to their patients, under or outside the surveillance of bureaucratic accountability, in ways that recognise them as ‘whole persons’, such as taking extra time to provide emotional support or responding to concerns that may not attract compensation under medical insurance guidelines. In this book contributors elucidate the ways in which technologies and policies affect both the visible and the invisible work undertaken by patients and professionals. In a previous collection (Wathen et al., 2008), we focused on various configurations of people and technologies that perform the mediating work involved in enabling information seekers to locate, retrieve, understand, cope with and use health information. In addition to traditional mediators, such as doctors and nurses, we explored the role of new mediators that have emerged with the widespread diffusion of information and communication technologies (ICTs), such as software designers, web site producers and makers of digital images. These themes are taken up again in this volume. Health care policies in industrialised countries are appropriating the language of choice and empowerment to shift the burden of care from the collective to the individual. Technologies play a variety of roles in this shift, including use of the internet for information and communication, new devices for monitoring and treatment and new forms of bureaucratic control through the collation of myriad data for assessing individual and institutional performance in the health care sector. Like Mol (2008), we are concerned with how, in her terms, the ‘logics’ of ‘choice’ and ‘care’ interact. Whereas she focuses on practices, we use ‘work’ as a lens through which to examine the ways in which patients and professionals cope with competing pressures. While she does not explicitly address the (re)emergence of empowerment discourses within neo-liberal policies, in her analysis of how individual patients and professionals are embedded within collectives of family, friends, colleagues and so on, she also hints at the policies and politics foregrounded in this volume. To illustrate the work involved in being healthy, and the ways that changes in technology and policy may affect it, consider the following fictional example. Four years ago, Mary was diagnosed with diabetes. This came as a shock to her as she was unaware of any history of

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diabetes in her family. Following her diagnosis, Mary spent a lot of time informing herself about alternative and allopathic treatments, the possible course of the disease over the longer term and what she needed to do to manage her condition in terms of lifestyle and diet. She attended clinics and support groups suggested by her health care provider. Over time, she became involved in helping with organising and fundraising for a diabetes self-help group. She also learned some basic nursing skills, including how to monitor her medication, test her blood and inject insulin. Recently, she was asked by a patient advocacy group to help others by recounting her experiences on a web site. Mary is beginning to think that having diabetes is like having another job. The work she does to stay informed reminds her of being at school and her efforts to educate others, raise money, organise meetings for her support group, along with the daily medical tasks she does to manage her condition, consume much of her time, energy and skill. When Mary was first diagnosed, she felt good about working for herself and on behalf of others, but now she is tired and she resents feeling pressured to be consistently upbeat and positive about her disease. Sometimes, she just wants to resign from this unpaid job and have someone else take over. Mary’s tale illustrates some of the key themes of this book. The contributors engage with questions about changing work configurations, obligations and redistribution of work implied in or resulting from consumerist health policies; new and shifting divisions of health labour, including (de) and (re)skilling of work arising in connection with new technologies; and the implied blame placed upon those who are not compliant with the imperatives embedded in the discourses of health promotion. Contributors also consider questions about the conditions under which people can meaningfully inform themselves and use their knowledge when engaging not only with health care professionals but also with administrators and insurance companies as well as fellow patients. The authors in this book go beyond the simple equation that more information equals better health outcomes. They remind us that information is neither a substitute for relationships of care nor for healthy environments. The emergence of ‘expert’ patients and the discourses of personal responsibility for health not only affect lay citizens, but also have implications for health care professionals. The redistribution of health work raises a wide range of questions including deskilling and ‘disempowerment’ of professional clinical roles; time diverted from direct patient care to administrative tasks; pressure to alter procedures and shape reporting practices in response to a growing array of indicators

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developed to monitor clinical performance; the potential for misinformation when lay health ‘consumers’ attempt to diagnose and treat their own conditions; and the health risks associated with the transfer of skilled work to patients and their families. Many of these issues relate, at least in part, to a clash of cultures arising from the imposition of managerialism on hitherto self-regulated professionals (see Pollock, 2005), but throughout this book, our focus on immaterial and invisible work and labour also highlights other dimensions of the changing patient–professional relationship.

Organisation of the book In this book, we—the editors and contributors—examine the implications of the emerging landscape of health-related obligations for ordinary citizens. We describe the ways in which the patient as an autonomous consumer has been structured in late twentieth/early twenty-first century health policy, and then move on to explore how the re-engineered patient engages with technology in the course of attending to ‘health’. These themes thread together a series of chapters on health policy, self-care, engagement with technology, health work and the ways in which they come together in specific settings. We consider the roles of ICTs in the reconfiguration of rights and responsibilities between providers and users of health information and health services, focusing on the dynamics of the consumption–production nexus and the role of work in advanced capitalist societies. By situating the discussion of the social relations of information technology and health in the context of ‘work’, we offer new insights for scholars, as well as significant implications for practitioners and policy makers who are concerned with the impact of health promotion strategies and self-care programmes that emphasise lay persons’ responsibility for health. The book is divided into four parts. Part I addresses the origin and construction of health policy discourses. The two chapters in this section set the stage by describing the historical contexts from which contemporary health policy discourses have emerged and discuss how these discourses are rationalised and enacted in policy and practice, illustrated by examples of technology-enabled ‘e-health’ projects. In Chapter 2, Bella traces the history of Westernised public health care as it has unfolded in the UK and Canada, in contrast with the US. She explains how health ‘care’ work has migrated from the home, to the hospital and back home again, and how ‘public’ health care is being ‘re-privatised’. In Chapter 3, Veinot examines how the policy discourses associated with

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two government health initiatives, HealthyOntario.com, a Canadian consumer health information web portal, and the UK’s Expert Patients Programme, constitute patient/consumer empowerment, prescribe the role of information, and constitute the powers, responsibilities and obligatory labour of patients/consumers. Drawing on Foucault’s concept of governmentality, Veinot argues that empowerment discourses may be used to constitute citizens’ choices in ways that increasingly subject them to external power, rather than enabling them to exercise their own. The chapters in Part II explore how, in view of changing health care policies and the expanded access to health information enabled by the internet, health-related knowledge is negotiated between lay people and medical care providers. A recurring theme is the ways in which lay participation influences aspects of health work that were formerly the exclusive domain of medical professionals, such as diagnosing medical conditions. In Chapter 4, Wilcox describes how debates over expertise and experience involve questions about the process of knowledge production, the authority of scientific and biomedical knowledge, the professional roles of scientists and physicians and the definition and meaning of expertise, knowledge and experience. Wilcox suggests that the debates over expertise have not only had to do with standards for knowledge, but also with broader debates over the democratisation of medicine and science. In Chapter 5, Spoel picks up some of these issues in the context of a specific type of medical practice. She describes the rhetorical–ideological tensions in the ways in which informed choice, a key principle of midwifery care, is articulated within policy documents produced by the College of Midwives of Ontario (a governing body for the profession) and how it is enacted in health care conversations between midwives and their clients. In Chapter 6, Gingras and Aphramor explore the complexities and contradictions of the discourses of autonomy and empowerment in another health occupation— dietetics. The work of dietetics involves ‘scientising’ food knowledge into nutrition evidence, then constituting a discourse of nutrition education to encourage the ‘right’ way of eating. In their efforts to treat and prevent nutrition-related problems according to evidence-based research, dietitians use ‘empowering’ strategies to enhance their clients’ compliance. Gingras and Aphramor suggest that this has the effect of shifting the responsibility for nutrition behaviour to clients, thereby depoliticising nutrition and health inequities, and contributes to clients’ feelings of shame and self-doubt when they are unsuccessful in losing weight. In Chapter 7, Weisgerber explores ‘sleep paralysis’, a condition

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in which, at sleep onset or upon awakening, a person’s brain emerges from sleep but fails to send a signal to the body to do the same, with the result that the individual is awake, but finds his or her body to be paralysed. Based on an analysis of messages posted to an online forum concerned with sleep disorders and interviews with forum users, Weisgerber’s discussion provides a good example of how people use the internet to construct an understanding of a stigmatised health condition and negotiate its management. In Part III, contributors explore how changing health policies that emphasise patient autonomy, self-care and personal responsibility influence the relationships between people with serious illnesses and their health care providers, and affect the distribution of work in managing illness and its consequences. In Chapter 8, Salander and Moynihan challenge the notion of patient ‘autonomy’. They present a critical historical overview of evolving models of the physician–patient relationship, particularly in the context of conveying difficult information, such as ‘bad news’, in cancer care. They describe the importance of ‘hope work’ which, they argue, is ignored in the discourse of patient autonomy. They propose that the ‘rules’ of contemporary patient–provider interaction may eclipse and disrupt the emotional nature of a caring relationship and neglect the importance of dependency and attachment that provide hope to patients in desperate circumstances. In Chapter 9, Salmon also discusses the communication work that patients and practitioners undertake during clinical consultations as well as how communication practices have been developed in physicians’ formal roles as employees. He suggests that these two aspects of communication work sometimes diverge as employers’ demands on practitioners do not always address the aspects of communication that would be of greatest benefit to patients. Goldenberg introduces a different kind of work in Chapter 10, namely the civic work of sustaining health charities and the expectation that women who experience breast cancer should maintain a public face of happy enthusiasm through the course of their disease. She describes how the breast cancer cause has emerged as the darling of consumer activism, corporate philanthropy and community charity in what appears as a remarkably unified effort to run, race and reach for the cure. Goldenberg explores some of the factors that motivate the discourses surrounding breast cancer and explains how the earlier stigma associated with the disease has been replaced by an upbeat language of survival. In Part IV, contributors discuss, in the context of shifting emphases in health policy, new obligations and opportunities enabled by ICTs for

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citizens to learn about and maintain their health, and to manage illness. In Chapter 11, based on data from a study of home-based internet use in Canada, Bakardjieva describes the knowledge practices enacted by users in their everyday lives and considers their implications for the relationships between health care providers and members of the lay public. Her analysis reveals three main forms that reflect the ‘quest for agency’ in the practices of ordinary internet users who have health concerns. In Chapter 12, Adams describes the practice of ‘crowd-sourcing’ in which health care ‘consumers’ are encouraged to provide feedback via the internet about institutions, physicians, treatments and services and examines postings on several ‘share your experience’ web sites that invite patients to tell their stories. She observes that, when people are invited explicitly to review an institution, service or provider, there is a secondary expectation that the gathered information can be used to greater social and political ends, and she suggests that this activity constitutes a new form of civic health work. Combining research on the ‘e-society’ and sociology of health research about ‘the new public health’, in Chapter 13 Henwood and her colleagues offer a critique of ‘e-health discourse’ which links information and ICT use and self-care to notions of patient empowerment. Drawing on an actionoriented research project with people seeking to manage their weight, they employ a Foucauldian notion of discourse and of knowledge/power to reflect on the sociotechnical configurations that constitute self-care in the context of obesity management. Their analysis makes visible some of the different types of work involved in the performance of both ‘informed patient’ and ‘health-e citizen’ identities in relation to weight management. In the final chapter, we draw together the major themes discussed throughout the book and consider their implications for health policy. We discuss emerging notions of civic responsibility, expertise, the concept of patient-centredness, empowerment and the role(s) of ICTs in supporting or influencing change in citizens’ health and the healthrelated duties of lay citizens and practitioners. We pay particular attention to the ways in which different moral and technical imperatives intersect to shift the burden of health care to the individual and further away from the collective. We argue that supporting people to be healthy and to be informed should not come at the cost of blaming or neglecting those who are ill.

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Part I

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In Sickness and in Health: Public and Private Responsibility for Health Care from Bismarck to Obama Leslie Bella

Publicly supported health care was created over a century ago and by the mid-twentieth century had become a reality in most industrialised countries. In recent decades, however, health care has become increasingly marketised and ‘health’ is again being reconfigured as a personal rather than a collective responsibility. This chapter traces the history of public health care from its origins to these twenty-first century (re)configurations. Public health care originated in Germany in 1883 when Chancellor Otto von Bismarck responded to working class activism by requiring illness insurance for workers (Therborn, 1984). His programme became a prototype for most other Western countries, including the UK and Canada, and also influenced progressive politics in the US. Until Bismarck’s reforms, caring for the sick had been a private rather than a public or collective responsibility and most health care workers were family members (usually mothers, daughters and spouses) or servants (where families could afford them). Hospitals, usually charities or related to work houses, were a last resort for the poor (Baggott, 2004). Physicians called at home, using income from well-to-do patients to subsidise care for those unable to pay. The growth of public health insurance in the twentieth century shifted responsibility for treating disease and caring for the ill from the private to the public realm. Except in the US, most hospitals received state funding to provide care at little or no cost to patients. Instead of being the last resort for the very ill and impoverished, hospitals became the technologically superior (and costly) locations for treating serious trauma and illness. By the 1960s, most industrialised countries provided 13

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In Sickness and in Health

universal health insurance and most physicians were paid by the state (or in the US, by managed care organisations (MCOs)). Physicians’ work was relocated from patients’ homes to clinics and hospitals in a system in which the primary emphasis was on ‘illness care’, rather than population health. In 1978, the World Health Organization (WHO) challenged this emphasis in the Alma Ata Declaration (WHO, 1978), asserting that health (broadly defined) was a fundamental human right, and that health policy should acknowledge both illness care and the creation of the conditions for health as collective responsibilities. Since 1980, public health care is again being moved back to the individual sphere—a transformation that contravenes the principles of the Alma Ata Declaration. Neo-conservatives, such as Margaret Thatcher (and Tony Blair!) (see Hunter, 2008) in the UK, and Brian Mulroney and Stephen Harper in Canada, deploring what they regard as the inefficiencies of public programmes, have marketised public health care, re-opening opportunities for profitable enterprise. ‘Leaner’ services (Sears, 1999) have pushed some of the work of health care back to individuals and their families. This work, which increasingly involves complex treatment technologies (Armstrong, 1994), has been re-privatised as ‘home care’, resulting in a particularly heavy burden for women, both as family members and as poorly paid home care workers. At the same time, public health is being reconfigured as ‘self care’ rather than as a collective responsibility for healthy social and physical environments. Under the rubric of ‘patient empowerment’, governments and MCOs increasingly call upon patients and families to inform themselves about their health needs and to practise home-based self care. The good citizen, they claim or infer, accepts responsibility for his or her own health, eats a healthy diet, maintains a correct weight, exercises regularly, does not smoke or drink alcohol to excess (a daily glass of red wine is recommended for its antioxidant value) and participates in immunisation and screening programmes. The good woman ensures that her family follows healthy practices and uses resources available on the web to minimize demands on public services (Adams and de Bont, 2007; Harris, 2009). This chapter provides a brief history of the development of health care policy in three countries: the UK, Canada and the US. The first section traces Bismarck’s influence on the development of universal coverage in the UK and Canada, and on proposals for universal health care in the US, culminating in the Bismarckian proposals of Democratic Presidents Clinton and Obama. The second section describes initiatives to control the costs of health care and promote efficiency in all three countries,

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including the extensive marketisation of public health care in the UK. The third section traces the reconfiguring of the patient as an empowered consumer responsible for his or her own health. The concluding section draws together evidence from health policy in the three countries to show how ‘health’ is being reconfigured as an individual rather than a collective responsibility.

Public responsibility for health care The National Health Service of the United Kingdom The National Health Service (NHS) in the UK was the mid-century creation of a unitary government with a vision of universality, built upon an earlier Bismarckian model. By 1900, about a third of Britain’s working class had been covered by ‘club practice’. Unions and/or employers paid capitation (a fixed sum for each of the eligible patients on their lists) to a physician (Baggott, 2004), but doctors found the pay inadequate and resented their control by lay committees. In 1911, as labour began to organise in Britain (Therborn, 1984), the UK government followed Bismarck’s lead and introduced a similar programme (Hamowy, 2001). By the Second World War, 43 per cent of UK workers were covered, but not their dependents or the unemployed. Weaknesses of the system were evident in the 1930s, when those who were out of work lost their benefits (Baggott, 2004). Doctors lost income but the need for health care continued, reducing resistance to a universal programme. The Second World War revealed the UK’s chaotic patchwork of charitable and municipal hospitals, increasing support for comprehensive reform (Baggott, 2004). Aware of the international influence of Marxism and the Labour Party’s growing strength, the war-time government proposed a post-war welfare state, including Beveridge’s proposals for universal health care. At the end of 1945, the Labour Party was elected to government for the first time. Health minister Aneurin Bevan, inspired by socialised medicine in Eastern Europe, wanted to nationalise all hospitals, physicians and public health services, so that all health workers would become state employees. Initially, family doctors refused but, in 1948, they accepted capitation arrangements similar to those under the Bismarckian programme of 1911 (Baggott, 2004), although specialist physicians were allowed to continue private practices alongside their work for the new NHS. While the NHS provided comprehensive health care to everyone at no charge, a second tier of for-profit health services remained an option for those able to pay.

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In Canada, powers are distributed between federal and provincial governments, with provinces responsible for health and welfare. Public illness care was delayed in Canada, first by the opposition of physicians and the comparative weakness of the political left, and then by the need to arrive at federal–provincial consensus (Taylor, 1978). At the beginning of the twentieth century, the Canadian medical profession was aware of health reforms in Germany and the UK, but argued that they would degrade the profession. ‘The doctor becomes the hired man. He gives away his independence and has to hob-knob with those who are his inferiors in every way’ (Naylor, 1986, p. 32). However, like doctors in the UK, Canadian physicians became more supportive of health reforms when their incomes were eroded by the unemployment of the 1930s. Although a reform proposal in the province of British Columbia was ultimately defeated by physicians, the Canadian Medical Association asked for help to care for those on relief, and in the three prairie provinces some municipalities compensated physicians who did so (Naylor, 1986). Aware of the Beveridge proposals in the UK, as well as the growing support for the left-wing Cooperative Commonwealth Federation (CCF) (later to become the New Democratic Party (NDP)) in the western provinces, Canada’s war-time government planned its own post-war reconstruction. Reports on housing, pensions, unemployment insurance, social assistance, hospital and medical care insurance were all developed, amounting to a plan for a Canadian welfare state. Most proposals intruded into provincial jurisdiction and were presented to the provinces in a series of federal–provincial conferences. Because of the complex politics around these discussions, it was not until 1957 that Canada introduced national hospital insurance, and almost another decade before physician care was insured. In both instances, the federal government paid 50 per cent of the cost of provincial programmes that met federal criteria. The prairie province of Saskatchewan was the crucible for Canadian health care insurance. The CCF government, led by Premier Tommy Douglas, was committed to far more than Bismarckian insurance for workers. Like Bevan in the UK, he sought to socialise medicine. Douglas had introduced universal hospital care to Saskatchewan in 1947, and by 1948, about a third of the province’s population also had medical coverage (Naylor, 1986). Federal contributions for hospital insurance in 1957 allowed Saskatchewan to cover all physician services. Anticipating that Saskatchewan’s programme would become the nation-wide

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Canadian Medicare

prototype, doctors campaigned against it. The province offered to pay them according to a fee-for-service model, rather than by capitation or salary, but the physicians still feared loss of professional autonomy and closed their offices on the day the programme came into effect. The government imported a mediator, an NHS physician from the UK, who proposed alternatives to direct payment by government. The doctors returned to work, having avoided both salary and capitation arrangements. Eventually, the fee-for-service arrangement accepted in Saskatchewan became the prototype for Canadian Medicare. In 1964, a Royal Commission recommended a universal, comprehensive plan to ‘make all the fruits of the health sciences available to all [Canadian] residents without hindrance’ (Naylor, 1986, p. 221). Doctors and insurance companies wanted the public programme restricted to those in need, to preserve their own monopoly of the lucrative middleclass market. However, Lester Pearson, Canadian Prime Minister at the time, had a minority government. The NDP (successor to the CCF) held the balance of power, and in 1966 the Medicare bill passed with their support. Canadian Medicare allows physicians to retain their ‘private’ practices but with public payment of fees-for-service; hospitals and doctors cannot charge patients for services covered by government programmes. Unlike the NHS, the Canadian plan excludes drugs, dental care and eyeglasses, and most working Canadians purchase additional private coverage, often through employer-sponsored group plans. Most lowincome recipients of government assistance receive some support for these additional costs.

Health care in the United States Policy making in the US requires the support of the President and both legislative houses. Legislators are able to vote without reference to party discipline, resulting in multiple points at which proposals can be vetoed (Maioni, 1998). Lobbying at these veto points has defeated successive health insurance proposals, leaving the US with a public system restricted to the elderly, veterans, aboriginal people and those in need (with definitions of ‘need’ varying widely by state). Most large employers and their regular employees purchase health insurance from MCOs, but these benefits are generally unaffordable to the self-employed and those in small businesses or who work on a casual or part-time basis. Further, MCOs can (and do) deny coverage to those who are a poor risk because of an existing health condition.

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In Sickness and in Health

The American Association for Labor Legislation (AALL) was the first US group to take up Bismarck’s ideas. In 1912, AALL drafted a proposal for the Progressive Party, but physicians were suspicious and insurance companies were opposed. Once war was declared against Germany, support for a Bismarck-style health insurance bill was further eroded by anti-German sentiment. However, as in the UK and Canada, interest re-emerged in the 1930s. A presidential committee proposed comprehensive social security, including unemployment insurance, old-age security and public health insurance. However, ‘a substantial segment of the medical profession’ expressed their opposition in medical journals and through a ‘torrent’ of representations to Congress (Hamowy, 2001, p. 22). In 1938, President Roosevelt made the first ‘affirmation by an American chief executive of the ultimate responsibility of government for the health of its citizens’ (Hamowy, 2001, p. 23). Various health care insurance bills went before Congress, but all failed. Physician opposition had been clear, and by the 1950s, ‘socialised medicine’ had been drowned out by McCarthyism and Cold War rhetoric. It was the assassination of John F. Kennedy that produced the conditions needed for a consensus on even limited public health care reform in the US. In 1951, bureaucrats had conceived the idea of restricting coverage to those in need (Hamowy, 2001) and President Kennedy had proposed such a programme in 1961, 2 years before his assassination. His successor, Lyndon Johnson, was committed to implementing health insurance proposals for the elderly and those on low incomes, as part of Kennedy’s legacy. Physicians and institutional health care providers supported the proposals because they anticipated additional income from providing services to those in need, and private insurance companies liked the proposal because government would not impinge on their primary market. Medicare (hospital insurance for those over 65 already entitled to social security benefits) and Medicaid (providing hospital, diagnostic and physician services to those classed as needy) were approved by both Congress and Senate in 1965. Eligibility for Medicaid is determined by individual states resulting in considerable disparity in access to support across the US. For instance, in 1986, in the state of California, a family of four was eligible if their income was less than $11,208, while the comparable figure in the state of Alabama was only $1764 (Hamowy, 2001). In 1992, President Bill Clinton resurrected the health care debate in the US as he sought to ‘take on the health care profiteers’ (PBS, 2008). He launched a task force headed by his wife Hillary to ‘overhaul the nation’s

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chaotic, $915 billion health care system, and extend medical coverage to 37 million’ (PBS, 2008). The health care industry launched massive opposition. The Clintons’ Bismarckian proposal that all employers provide health insurance for their employees was attacked as ‘socialised medicine’ and a ‘quintessential example of big Government Democratic Liberalism run wild’ (PBS, 2008). The Health Insurance Association of America (the HIAA) expanded its lobbying budget to $50 million, with television advertising featuring ‘Harry and Louise’, and ‘more than four hundred and fifty thousand contacts with Congress—phone calls, visits, letters—almost a thousand to every member of the House and Senate’ (PBS, 2008). The Clintons’ position was worsened by unrelated political factors and, when the Democrats lost their Congressional majority in the mid-term elections of 1994, any possibility of health care reform disappeared. In his run up to the 2008 US presidential election, Barack Obama once again placed health care reform on the policy agenda. Like Bill Clinton, Obama highlighted ‘skyrocketing’ health care costs, pointing out that half of personal bankruptcies in the US result from paying for health care and that 45 million Americans lack health insurance coverage, 80 per cent of them in working families. A recent OECD (Organisation for Economic Cooperation and Development) publication supports his arguments. Since 1960–1961, life expectancy at birth in the US has fallen from above to below the OECD average, and the difference in life expectancy between the rich and the poor in the US has increased. Infant mortality is also higher in the US than in any OECD country except Slovakia (Carey et al., 2009). During the year 2007, 28 per cent of the US population had no health insurance and another 14 per cent were under-insured. And, even though overall health expenditures in the US are the highest among all OECD countries (over $6000 per capita), only 46 per cent of that expenditure is public, a lower figure than in any OECD country except Mexico. Obama’s election platform included a proposal which, like that of the Clintons, was based on Bismarck’s model and would have both required and subsidised employer-based coverage to be purchased from the private sector (ObamaBiden, 2008). The health insurance industry again made energetic use of multiple veto points that enabled it to defeat earlier health reform proposals. Many Democrats facing re-election later in 2010 were increasingly nervous about wavering public and corporate support for health care reform. In his State of the Union address, Obama re-iterated his

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Leslie Bella 19

20

In Sickness and in Health

Don’t walk away from Reform. Not now. Not when we are so close. Let’s find a way to come together and finish the job for the American people. (Applause.) Let’s get it done Let’s get it done (Applause.). (New York Times, 2010) In March 2010, US legislators did ‘get it done’, passing a complex health reform bill that expands coverage to 32 million Americans who are currently uninsured, with subsidies for those unable to afford insurance, and exchanges to help people find coverage from for-profit and nonprofit insurance companies and MCOs. This final compromise excluded the ‘public option’, favoured by the left wing of the Democratic Party, as well as coverage for controversial services such as abortion. As a result, the US still lacks the public health care system developed by most other Western nations.

Efficiency through marketising Public responsibility for health care has been systematically challenged by neo-conservatives in the US, Canada and the UK who argue that publicly funded and administered systems are more costly and less efficient than those that are private. While it is true that the NHS in the UK quickly became more costly than had been initially predicted, a Conservative Government inquiry in the 1950s concluded that the NHS ‘was not extravagant’ and ‘provided good value for money’ (Baggott, 2004, pp. 92–93). In 1960, the NHS was spending £19 per capita, or 3.9 per cent of GDP, when the average for western European was 4.0 per cent (Pollock, 2005). Although UK health expenditures continued to grow, costs remained below average for Europe and substantially below those of the US. For instance, in 2000, health spending represented 7.3 per cent of GDP in the UK as compared with 13 per cent of GDP in the US (Pollock, 2005) and OECD data for 2005 suggest per capita spending on health close to the OECD average (excluding the US) (Carey et al., 2009). Rather than costing too much, both Hunter (2008) and Pollock (2005) describe persistent underfunding of the NHS, chaos resulting from ‘unwarranted confidence in structural overhaul’ (Hunter, 2008, p. 73), and essential abandonment of the commitments of 1948. Health care costs have also increased in Canada. In 1991, to rein in a deepening deficit, the Canadian government withdrew from its

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commitment to health reform, calling on Democrats and Republicans to work with him:

50 per cent cost-sharing arrangements with the provinces, establishing block grants instead (Odette, 1991). Under the new arrangement, the provinces could either pay more or cut services. Some provinces reduced both the number of hospital beds and medical school enrolment, while the province of Alberta tried to establish for-profit health care (contrary to the principles of Medicare as reiterated in the Canada Health Act of 1984) (Evans et al., 2000). As a result of this restructuring, and their own decisions to cut taxes, health now consumes up to 48 per cent of the revenues in some provinces while much of the country deals with physician shortages and waiting lists for treatment. Consequently, the Canadian Medicare system is not only cost-effective but some argue that, as in the UK, it may be underfunded to the extent that it may become unsustainable (Evans, 2007). While neo-conservatives argue that marketised health systems are more cost-effective, per capita health care expenditures in the US are actually among the highest in the world. The public costs of US Medicare and Medicaid alone are higher than the universal health care systems of most other OECD countries. In 1972, the US Congress tried to contain ‘spiraling costs’ by adopting the NHS model of paying MCOs by capitation. Further reductions were made in 1983, with payment based on the patient’s illness at hospital admission, rather than on the actual cost of subsequent care. Known as the Prospective Payment System (PPS), this encouraged shorter patient stays (Hamowy, 2001). Hospital stays by Medicare patients were reduced by 22.8 million days, with many discharged to recover at home. Similar models for controlling costs were adopted by both private and public health care organisations in the US and elsewhere, effectively re-privatising often complex convalescent care work. However, early hospital discharge does not address the primary drivers of health care costs, such as greater use of expensive technologies, higher pharmaceutical prices (Carey et al., 2009) and the cost of the bureaucracies needed to monitor and approve treatment. Neo-conservative commentators are also critical of public health care because of the potential inefficiencies in monopolistic public services that may result from a lack of competition in the market. This argument is often used to justify importing business practices into public health care. For instance, in 1980, the UK’s Conservative Government under Margaret Thatcher required local authorities and hospitals to contract out non-clinical services such as laundry, food services and cleaning (Pollock, 2005). The government hoped to reduce costs and weaken public sector unions, as non-unionised employees of contracting companies were paid less and had fewer benefits.

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Leslie Bella 21

In Sickness and in Health

Marketisation of public health care in the UK begun under the Conservatives continued after the 1997 election of ‘new’ Labour. The NHS imported managers from the private sector to run public health care, a move that Pollock (2005) associates with the abandonment of the original NHS principles of service, beginning an inexorable march to marketisation, which quickly led to the contracting out of services. As quoted in Hunter (2008, p. 96), ‘Blair came not to bury Thatcher but to continue her work’. After 1997, Prime Minister Tony Blair pursued marketisation under the guise of a ‘new contract’ between the state and the individual. His was to be a ‘third way’ between ‘a nanny state’ decried by former Prime Minister Thatcher and a ‘victim blaming’ approach deplored by Labour (Baggott, 2004, p. 341). This ‘third way’ was to include improved complaints processes and new opportunities for citizen participation in NHS governance (Baggott, 2004). Under this rubric, patients were to be ‘empowered’ to engage in self care and provided with the access to information they needed to ensure health for themselves and their families. With the new contract, Blair reconfigured health care as an individual rather than as a collective responsibility. Public health care agencies were required to behave as if they were private. In practice this meant they had to pay a capital charge to government based on their real estate, purchase services on behalf of their patients from either the public or the private sector, finance new buildings by raising private capital to be repaid out of operating funds and contract with private sector organisations for routine surgeries. The resultant business and financing opportunities and related provisions under GATT (General Agreement on Tariffs and Trade) attracted international corporations, many of them with experience (and fraud convictions) in the US. Although this marketisation of health care is rationalised as offering more choices to patients (now recast as ‘consumers’), Himmelstein et al. (2001) argue that the effect of this process has been to drain already inadequate NHS resources away from patient care in order to increase shareholders’ dividends and to support the growing bureaucracies needed to manage the complex web of public and private contracts.

The responsibilities of the good citizen: Patient empowerment Although the term ‘empowerment’ has been used in recent years to bolster arguments in favour of marketising public health care, the idea of empowerment in relation to health and illness originates much earlier,

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in the women’s health movement, which evolved from within second wave feminism. A catalyst was the Boston Women’s Health Book Collective (BWHBC) who published Women and our Bodies, a Course in 1970 (a precursor to the well-known, Our Bodies, Ourselves, published in 1973). This first edition was intended to empower and was ‘meant to be used by our sisters to increase consciousness about ourselves as women and to build our movement, to begin to struggle collectively for adequate health care’ (BWHBC, 1970, p. 4). The book, and its successors, provided accurate and accessible health and medical information for women and countered the then dominant pathological approach to normal life events such as birthing, menopause and ageing. For the Collective, ‘empowerment’ continues to be understood as a political process through which women are inspired ‘to become engaged in the political aspects of sustaining good health for themselves and their communities’ (BWHBC, 1970). While women comprised ‘the largest segment of health workers, health consumers, and health decision-makers for their families and communities’ (BWHBC, 1970), the Collective argued that they were under-represented in positions of influence and policy making. Empowerment, according to these feminist understandings, was and is both collective and political, and intended to achieve broadly based social change (Goldenberg’s analysis of pink ribbon activism (Chapter 10, this volume) illustrates how feminist ideas of empowerment can infuse an illness movement). Policy makers who were developing public health strategies soon saw parallels between the ideas of ‘health promotion’, namely ‘the process of enabling people to increase control over, and improve their health’, and ideas of empowerment defined as ‘the process by which people, organizations and communities gain mastery over their lives’ (Labonte, 1994, p. 253). Subsequently, the idea of empowerment, as it emerged within second wave feminism, was co-opted in support of health promotion, but with transformations in meaning. The women’s movement in general, like the Boston Collective, saw empowerment as something coming from within, facilitated by collective processes and overtly political. In the hands of health promotion professionals, empowerment became instead a process of working with individuals and groups to help them reach state-sanctioned health promotion objectives. Labonté articulates this distinction as that between to empower as an intransitive verb, in which one can only empower oneself, and to empower as a transitive verb, which provides for one to empower another person (or organisation). While the intransitive meaning is dominant in the rhetoric of the women’s movement, the transitive meaning is strongly

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Leslie Bella 23

In Sickness and in Health

represented in health promotion literature, policy and practice. In addition, bureaucratically sanctioned health promotion had to abandon political nuances in the term as used by the women’s and other social movements. Empowerment was thus highjacked into the service of prevention and health promotion, which in turn was reconfigured as the responsibility of individual citizens and citizen groups. As the idea of patient empowerment and choice entered clinical discourse, it was used to justify the relocation of nursing care from hospitals back to private homes through early discharge and home care programmes. This cloaked the reality that increasingly complex care work was being reprivatised to the home and that illness care was now reconfigured as an individual rather than a collective responsibility. In terms of the patient–provider relationship, ‘patient empowerment’ meant that people coping with medical conditions were encouraged to seek information, discuss it with their physicians and exercise choice in terms of treatment. With this development, a significant new body of health work, that of gathering health information, was transferred from physicians and other health care workers to their patients. Whether giving this responsibility to the patient was actually experienced by the patient as empowering was another matter (Salmon and Hall, 2004), but the assumption that it would be is now embedded in a range of health care information initiatives. For instance, Britain’s NHS, the Canadian provinces, the US government, as well as large MCOs in the US, have all developed public information programmes intended to help patients educate themselves about their health conditions, make responsible lifestyle and illness care choices and discuss these issues with their health care providers, all in the name of ‘empowerment’. In the UK, the idea of patient empowerment is pursued in the Labour government’s Next Stage Review of the National Health Service. According to the UK Department of Health (2008), ‘we must continue to empower patients with greater choice, better information, and more control and influence’ (p. 3). A ‘Patient and Public Empowerment Branch’ within the Department of Health now has responsibility for both public participation and patient empowerment. The Branch is responsible for enhancing patient choice by improving access to reliable health information for consumers. Proposals include an accreditation scheme for telling the public whether information is reliable, as well as the development of ‘information prescriptions’ for patients to ensure that they receive the right information at the right time: They [information prescriptions] point people to sources of information about their health and care—for example about conditions and

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treatments, care services, benefits, and support groups. They include contact details and website addresses that people may find helpful and where they can go to find out more. The information prescription will be given to people and their carers by health and social care professionals. (UK Department of Health, 2008, p. 9) In addition, NHS Direct now provides a comprehensive ‘national healthline, providing expert health advice, information and reassurance, using world class telephone, website and digital AV services, and to be the National Health Service provider of choice for telephone and digitally delivered services’ (National Health Service, 2009b). NHS Direct also provides out-of-hours support for physician and dental care; telephone support for patients with chronic conditions; 24-hour response to health scares; and remote clinics held by telephone. The rhetoric of ‘empowerment’ is also embedded in Canadian health policy discourses. In 1994, the Canadian government considered how the emerging information highway could be used to benefit citizens and, in 1997, the federal government ministry, Health Canada, created two organisations later subsumed under a new Health and Information Highway Division. Also in 1997, another federal government ministry, Industry Canada, released a ‘vision’ document that emphasised the business development and employment creation opportunities of building on Canada’s expertise in health and in information technology. A reformed health care system was envisioned in which online health information would ‘empower’ Canadians to care for their own health, reducing their reliance on an overtaxed system of illness care: our health care system is being fundamentally transformed. . . . We are moving from a focus on acute care and cure to a broader vision that includes health promotion and disease prevention; from a focus on central control of institutions to regional support of home and self-managed care; and from a reliance on medical specialists to a recognition by all citizens of all citizens to assume greater responsibility for their own health (Canadian Network for the Advancement of Research, Industry and Education. (CANARIE, 1997, p. ix) (author’s emphasis) Building on these federal initiatives and, after consultations with the provinces, the Canada Health Infoway was created in 2001 as an independent, not-for-profit corporation that was intended to accelerate development of Canada’s health information and communication

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In Sickness and in Health

The Canada Health Infoway empowers individuals and communities to make informed choices about their own health, the health of others and Canada’s health system. (Health Canada, 2001, p. 9) (author’s emphasis) Part of the mandate of the new agency was to: further develop and coordinate, across jurisdictions, tactics to provide trusted health information, advice and other health care services to the public in an integrated manner through a variety of formats including public websites, telephone advice lines, self care books and public interfaces to their electronic records. (Health Canada, 2001, p. 38) Although the government of Canada has invested well over a billion dollars in the Canada Health Infoway since its inception, much of the agency’s effort has gone towards the development of (yet to be implemented) electronic health records systems. The early emphasis on providing the public with health information, manifest initially in the now defunct Canadian Health Network (a federal online health information service), is largely absent and the responsibility for consumer health information now rests with the provincial governments. Within the chaotic system of private and public health care in the US, ‘empowerment’ is conceived primarily in terms of individual patient responsibility and freedom of choice, with both the private and public sectors providing patients and caregivers with health information needed to make ‘good’ choices. In this context, the internet is the primary means for supporting citizens in their search for both health and health care. For example, a 2001 text for hospital managers explains how the digital age has transformed health care, providing health care ‘shoppers’ with report cards on various services and institutions, transforming business practices and purchasing arrangements and providing new ways of communicating with existing and potential clients (Coile, 2001). Hospitals and MCOs all have websites to inform patients, competing to become ‘the consumer’s most trusted website and portal for managing the patient’s or enrollee’s health needs’ (Coile, 2001, p. 139). To keep costs down, MCOs want to minimise their enrollees’ use of services and therefore benefit if their enrollees use health information to

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technologies, electronic health records, telehealth and public health surveillance. The new agency also used the language of empowerment:

engage in a healthier lifestyle. For example, Kaiser Permanente’s ‘Living Healthy’ pages provide information needed to avoid the services of health care professionals. Information on ‘healthy ageing’, ‘quit smoking’ and ‘weight management’ include a variety of tools for calculating appropriate weights, evaluating alcohol use and assessing the benefits of exercise and the costs of smoking. A Health Encyclopedia (together with a ‘symptom checker’), a drug encyclopedia and a database of ‘natural’ medicines are also all available on this site. The US has also made public sector investments in online health information. For example, the National Library of Medicine’s (NLM) online service, Medline, provides access to the medical research literature, and its free, consumer-oriented MedlinePlus combines Medline resources with a number of other authoritative sources, including medical and drug encyclopedias, patient tutorials and health news. The NLM describes MedlinePlus as ‘a goldmine of good health information from the world’s largest medical library, the National Library of Medicine’. According to former Vice-President Al Gore, online health information will ‘do more to reform and improve the quality of health care in the US than anything we have done in a long time’ (Walton and Booth, 2004, p. 259). Information, he implied, supports the individual’s responsibility to make appropriate health choices.

Individual and collective responsibilities for health and health care Each of the countries discussed in this chapter has developed some form of public health care. The UK introduced health insurance for workers in 1911 and achieved a universal public programme with the introduction of the NHS in 1948. Canada introduced universal hospital care in 1957 and the physician care programme, Medicare, in 1966. The US achieved public insurance for the old and the needy in 1965, and, President Obama will expand coverage further. As I have shown, health care in all three countries is increasingly marketised, reflecting their governments’ ideological preferences for private sector solutions, often masked in the rhetoric of cost-effectiveness and efficiency and under the guise of personal or ‘consumer’ choice and empowerment. As a result, the idea of public health care as a right of citizenship has been overtaken by the idea that, as informed consumers, patients should make their own health care choices and be personally responsible for their own health and that of their families.

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Leslie Bella 27

In Sickness and in Health

The rhetoric of ‘patient empowerment’ is used in the UK, the US and Canada to support the case for individual rather than collective responsibility for health care, and to disguise the reality that significant work has been downloaded to individuals and families. For instance, early hospital discharge increasingly returns seriously ill people to their homes, where family members provide technologically sophisticated home nursing, often without adequate professional support. And, because policy makers in the UK, the US and Canada assume that people who are well-informed will perform more effectively as consumers in the health care marketplace, lay citizens are encouraged to use new technologies, such as websites and call centres, to inform themselves about health conditions in the hope of reducing demands on health professionals and on the system, and to use information to keep themselves healthy and to engage in self care. Although research from the UK confirms that informed, active patients do use fewer services (Baggott, 2004), as discussed by Bakardjieva (Chapter 11) and Harris (2009), significant but unacknowledged health work is involved in searching for, comprehending and evaluating health information. Online health information seekers, most of whom rely heavily on proprietary search engines that retrieve a plethora of potential information sources, some of which are of dubious quality, often have difficulty finding reputable sites. Many people also lack work- or home-based access to the internet (30 per cent lack access in Canada (Statistics Canada, 2006)). Although some lay information searchers may develop considerable ‘medical’ expertise (as described by Wilcox, Chapter 4), for many people medical terminology is often difficult to understand and they may need professional help to comprehend, validate and interpret the material they find online. Most significantly, they may also want help from someone who cares about them as they learn to cope with the implications of the information they have located; a need that may actually increase rather than reduce demands on formal and informal care providers (see, for example, Harris, 2009). It is also important to note that most of the health policies and programmes described in this chapter are concerned with diagnosing and treating illness, rather than promoting ‘health’ per se. For instance, even though the NHS, as introduced in 1948, included public health as well as hospital care and physician care under the umbrella of ‘public health care’, illness services receive most of the ‘political and media attention, professional lobbying, resource flows and public concern’ (Hunter, 2008, p. 2). As such, ‘public health’ remains a Cinderella. And, while the WHO advocates health policy that includes collective responsibility for

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guaranteeing access to all the determinants of health (including clean water, pure air, safe and adequate food, employment, homes in safe and supportive communities), this notion of public health is de-emphasised in health policy, at least in the three countries discussed in this chapter. In the US, Canada and the UK, the rhetoric of patient empowerment has been used to recast much of health-related public policy into individual responsibility for making informed lifestyle choices. For instance, Barack Obama’s presidential election platform of 2008 referred to ‘empowering’ citizens to take care of their own health: Preventive care only works if Americans take personal responsibility for their health and make the right decisions in their own lives—if they eat the right foods, stay active, and stop smoking. Barack Obama and Joe Biden will ensure that all Americans are empowered to monitor their health by ensuring coverage of essential services in all federally supported health plans. (ObamaBiden, 2008, p. 8) (author’s emphasis) Even Obama’s promises for a healthier environment were cast in terms of individual responsibility for health, with proposals for education and prevention campaigns ‘to help Americans make better choices to improve health’. Ultimately, Obama’s calls for patient empowerment reflect US commitments to individualism, free enterprise, personal responsibility and freedom of choice. This contrasts with the commitment to the collective that underpinned the original form of the NHS in the UK, that was explicit in the concept of empowerment used in the second wave women’s movement and that is suggested by the Alma Ata declaration of the WHO. Clearly, the imperative of personal responsibility, at the expense of the collective, now dominates public policy, both in sickness and in health.

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Leslie Bella 29

Power to the Patient? A Critical Examination of Patient Empowerment Discourses Tiffany Veinot

It is often claimed that there is a revolution underway in health care in Western countries, with informed and empowered patients increasingly assuming the role of ‘consumers’ (Decter, 2000; UK Department of Health, 2006a). The availability of more and better information, especially from the internet, is said to diminish knowledge asymmetry between physicians and patients, thus equalising power in their interactions (see, for example, Hardey, 2001). Patient ‘empowerment’ is widely positioned as a good thing for patients because, as they become more informed, they are able to make their own health care and treatment choices (see, for example, Coulter and Magee, 2003). However, as Bella (Chapter 2) argues, the nature of this ‘health care revolution’ may be somewhat different than its advocates claim. The empowerment mandate has resulted in a number of government initiatives directed at health ‘consumers’ in Canada, the UK and the US. These initiatives assume the following: it is valuable to increase the responsibility of patients/consumers to understand and manage their own health; patients want to become empowered and thus more involved in their health; and they seek health information for this reason. Moreover, empowerment discourses assume that power is something which can be given to a person, an idea which Foucault (1980a) called a ‘commodity’ model of power, in which power is seen as something which one can possess or acquire. Thus empowerment discourses treat the verb ‘to empower’ as intransitive (see Bella, Chapter 2). To understand what is at stake in the discourse of patient/consumer1 empowerment, it is necessary to locate it in the wider field of institutional power relations that the discourse reflects and enacts. Because power can operate both negatively, through repression, and positively, 30

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by producing knowledge or identities (Cheek, 2004; Hook, 2001), I analyse policy-based discourses of patient/consumer empowerment according to a power-focused Foucauldian framework. Foucault’s (1991) concept of ‘governmentality’ describes a contemporary ‘art of government’ which focuses on exercising power through creating a happy, healthy and stable population of ‘governable’ subjects. Foucault sees government as increasingly focusing on ‘the conduct of conduct’ (Gordon, 1991, p. 2) through the creation of new knowledges and techniques that establish the acceptable limits of behaviour. In this chapter, I demonstrate how the patient/consumer empowerment discourse enacts a form of governmental power in which ‘proper’ health-related conduct is clearly delimited; and, similar to Bella (Chapter 2), I suggest that empowerment-based health discourses conceal policy agendas of health resource rationing that shift the burden of care and transform self-care practices into civic obligations. Accordingly, such policies contradict the notion of ‘gaining mastery’. This chapter contributes to existing policy analyses of the Expert Patients Programme (Badcott, 2005; Edgar, 2005; Tyreman, 2005a; Wilson, 2001) and of Canadian consumer health information websites (Harris and Bella, 2010). However, this chapter offers a novel contribution in its explicit and detailed focus on the discourses surrounding these initiatives. I adopt a definition of empowerment highlighted by Bella (Chapter 2), ‘the process by which people, organisations and communities gain mastery over their lives’ (Labonte, 1994, p. 253). I analyse two policy initiatives that claim to empower people in relation to health. The first is HealthyOntario.com in Canada and the second is the Expert Patients Programme in the UK. I purposely selected these initiatives to provide insight into two apparently different policies, focusing respectively on the general population and chronically ill people.

The study: A discourse analysis of government-sponsored empowerment policies This research uses Foucault’s archaeological methods, which involve examining the history of statements found in an archive of discourse about a particular theme (Foucault, 2002). Archaeological methods investigate how statements are used, and the relationship between statements, things, institutions and subject positions (Kendall and Wickham, 1999). This approach understands discourse as a body of statements organised according to particular rules (Kendall and Wickham, 1999) or ‘a set of possible statements’ (Cheek, 2004, p. 1142). For Foucault

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Tiffany Veinot

Power to the Patient?

(1980a), discourse helps to establish knowledge and identities that are accepted as truth in society. Ideas about what is true ‘induce regular effects of power’ because they are ‘produced only by virtue of multiple forms of constraint’ (Foucault, 1980b, p. 131). Thus, Foucauldian analysis of discourse requires investigation and specification of the dynamics of power in a given setting. I constructed an archive of texts, which highlighted, as Foucault (1972) suggested, ‘the general system of the formation and transformation of statements’ (p. 130). These texts were produced by governments, government representatives or their agents in conjunction with HealthyOntario.com and the Expert Patients Programme (EPP). The archive was constructed after reviewing approximately 250 publicly available documents; documents analysed were selected because they reflect rationales for these programmes, as well as explicit discussion of the powers, roles and responsibilities of patients/consumers. I analyse 71 such documents produced by the Government of Ontario and its agents between October 2002, when HealthyOntario.com was launched, and March 2007. I also analyse 115 documents produced by the UK government and its agents in relation to the EPP between July 1999, when the programme was first mentioned in UK health policy documents, and March 2007. This includes (with those for the EPP in parentheses) 5 (0) speeches by government officials, 11 (18) press releases, 10 (64) administrative documents, 10 (9) policy documents, 8 (6) government reports and 27 (18) proceedings from parliament or select committees. Documents were analysed for discursive structure, including rhetoric (metaphors, argumentation, vocabulary and style, idioms), discursive positions and ideological statements (Jager, 2001). I examine how these policy discourses constitute health and patient/consumer empowerment, explain the role of information in health-related empowerment and situate the powers, responsibilities and work of patients/consumers.

HealthyOntario.com: Ontario’s information web portal for health ‘consumers’ From 1996 to 2003, the Canadian Province of Ontario was governed by a political party that pursued a neo-conservative agenda for health care reform, resulting in system restructuring that included hospital closures and the privatisation of long-term care (Williams et al., 2001). Physician shortages were also an issue of growing public concern during this period (McKendry, 1999). The government began to include

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the promotion of ‘wellness’ in its core vision for health and health care (Ontario Ministry of Health and Long-Term Care, 1999, 2000, 2001). At a time of plunging public approval ratings, the Ministry of Health and Long-Term Care launched a web-based consumer health information portal, HealthyOntario.com, claiming that it would ‘empower more people to stay healthy, learn about themselves and find answers to their health questions in an effortless way’ (Ontario Ministry of Health and Long-Term Care, 2002, p. 1). The creation of the portal reflected the policy priorities of encouraging Ontario residents to rely less on an under-resourced health care system and attempting to improve its image with the electorate. Although a different political party came to power in Ontario in 2003, the government continued to pursue similar policies of health promotion, culminating in the creation of a new Ministry of Health Promotion (Office of the Premier of Ontario, 2005). HealthyOntario.com was re-launched in 2004 under this new framework and the portal now features the promotion of ‘healthy lifestyles’ (Chowdhury, 2004). Careful examination of the HealthyOntario.com site and government statements about it reveals a discourse in which ‘health’ is constituted primarily in terms of ‘lifestyle’. Citizens live a ‘healthy lifestyle’ when they eat nutritious foods, manage their weight, exercise and refrain from smoking. These ‘good’ behaviours will be rewarded by reducing individuals’ risk of disease and early death. Health is presented as a dynamic state, achievable for all. Such a view is attractive in that it suggests that individual actions can make a positive difference in one’s life experience (and expectancy). It is, however, also problematic and often unrealistic because it ignores factors beyond individual control, such as genetic makeup, chance and social and systemic determinants of health, including poverty, gender or the environment (Evans et al., 1994). It also represents a reductionist view that fails to take into account other potentially important elements of health, such as emotional well-being, capacity for pleasure and enjoyment of life. It is useful to explore the constitution of ‘illness’ within this health and empowerment policy framework. In keeping with Foucault’s (1991) concept of governmentality, ‘un’-health is positioned within a discourse of economic rationality as something quantifiably preventable and explainable by rates of categorised risk behaviours. The precise costs of unhealthy behaviours, such as sedentary living and smoking, are repeated by rote (see, for example, Ontario Ministry of Health Promotion, [n.d.]), and government representatives do not hesitate to link these costs to health care sustainability: ‘[i]f we do not collectively take

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Power to the Patient?

actions . . . we will overtake the capacity of the health care system to respond’ (Legislative Assembly of Ontario, 2006c). Health-related empowerment, a core principle of the Ministry of Health Promotion, is described as being ‘enabled to improve’ one’s individual or collective health (Ontario Ministry of Health Promotion, [n.d.]), reflecting the intransitive form of the verb ‘to empower’ (Bella, Chapter 2). This empowerment-based policy discourse speaks to patients/consumers as citizens of Ontario, but it constitutes a new identity for them as ‘healthy Ontarians’ (Legislative Assembly of Ontario, 2006a), a social identity that is something to strive for, something that can be won through hard work. Ontarians are exhorted to ‘take charge’ (Legislative Assembly of Ontario, 2005b) or ‘take back control of’ their health (Ontario Ministry of Health and Long-Term Care, 2004a). This reflects the wider health promotion discourse that positions individual rationality and self-control as prerequisites for health (Lupton, 1995), while presenting health solely as an individual issue. Government discourse about HealthyOntario.com is tightly bound to these constitutions of health and empowerment, with provision of health information defined as ‘information to empower you’ (Ontario Ministry of Health Promotion, 2007). Within HealthyOntario.com, health information is largely framed as ‘advice’ rather than as something people can use to make their own decisions. Web-based information services are thus deployed strategically to encourage, persuade and build awareness towards the pre-defined ends, such as healthy eating (Ontario Ministry of Health Promotion, 2006). As the Minister of Health stated, HealthyOntario.com is a way for the government to give information ‘so [consumers] can make the right decisions’ (emphasis added) (Chowdhury, 2004). Hence this behaviour is both compulsory and elective, a message that has been observed in other government-sponsored health promotion programmes, such as a UK initiative to train rural residents in cardiopulmonary resuscitation (CPR) (Singleton, 2005). Additionally, for people already committed to personal health improvement, HealthyOntario.com is constituted as an ‘empowering’ tool that helps them refine their personal health regimes. Indeed, the medical editor of HealthyOntario.com has remarked that web sites have ‘just become this huge part of how people take care of themselves’ (Canadian Press NewsWire, 2004), further binding this information service with a health promotion discourse of ‘healthy living’. This perspective fails to acknowledge that people may use web-based health information for a number of reasons that do not ‘fit’ with a health promotion model, such as for emotional reassurance (Kivits, 2004), to

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maintain hope (Salmon and Hall, 2004) or to build better relationships with their doctors (Kivits, 2006; Salmon and Hall, 2004).

With such power for one’s personal health discursively established and the health system constructed as being under threat, the responsibilities of patients/consumers are many. First and foremost, ‘the single greatest contribution that we must all make to sustain our public health care system is to stay healthy in the first place’ (Ontario Ministry of Health and Long-Term Care, 2006, n.p.). Thus, health promotion and economic rationality discourses together communicate a message that people should avoid using medical care, because, if they do use it, they will be putting a collective resource in peril (see, for example, Ontario Ministry of Health and Long-Term Care, 2004b). In addition, a moral imperative emerges regarding the avoidance of unhealthy behaviours (Lupton, 1995), which reinforces victim-blaming and stigmatising of people who are ill (Nettleton and Bunton, 1995). HealthyOntario.com is also positioned to conceal the ways in which health care restructuring has persistently diminished the health care resources available to individual citizens. For instance, there are 136 medically under-served communities in Ontario (Ontario Ministry of Health and Long-Term Care, 2007), and waiting times for procedures are also a major public concern. Harris (2009), noting the pronounced inaccessibility of health care resources for many citizens, suggests that Canadian health information web sites such as HealthyOntario.com are increasingly being treated as a ‘proxy for care’, although actual usage of these services may not meet expectations (Harris et al., 2006; Wathen and Harris, 2003). Thus, in a material sense, many patients may have little choice other than to be involved in their care, a complete contradiction of the notion of gaining control that is central to the idea of empowerment. The emphasis within this policy discourse on individual responsibility for health may therefore increase the amount of ‘healthwork’ (Mykhalovskiy and McCoy, 2004) that is a civic duty of Ontario citizens. Being healthy is something we all need to ‘do a better job at’ (Chowdhury, 2004). It involves making a life-long commitment to ‘continuous improvement’ (Ontario Ministry of Health and Long-Term Care, 2004a). Again, being healthier means engaging in behaviours to reduce risk for illness. However, Ontarians are also implored to seek regular check-ups, model healthy living for children and create a healthier culture. They are also encouraged to increase their awareness of health

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The Powers and Responsibilities of Patients/Consumers

Power to the Patient?

issues (Legislative Assembly of Ontario, 2005a, 2006b; Ontario Ministry of Health Promotion, 2006), and to accept government priorities as their own. Consequently, this work is discursively framed as an imperative of ‘good citizenship’ (Harris and Bella, 2010; Mykhalovskiy et al., 2004). Such imperatives can regulate the behaviour of populations according to the needs of institutions, thereby submitting people to a type of expertise-based power (Nettleton and Bunton, 1995). Thus, the form of patient/consumer empowerment advocated by the government of Ontario may serve to direct people’s choices in particular ways and prescribe their growing health-related responsibilities, suggesting an incompatibility with ideas about the nature and effects of patient/consumer empowerment.

Making patients expert: Health programming in the United Kingdom The National Health Service (NHS) in the UK has experienced unprecedented reform (Stevens, 2004) and a significant influx of resources (Wanless, 2002) since the early twenty-first century. Major transformations have included localising health care delivery, increasing the health professional work force, introducing a range of national standards of care and implementing a vision of ‘a health service designed around the patient’ (UK Department of Health, 2000). This agenda of patientcenteredness has been associated with the launch of governmentprovided health information and training initiatives such as NHS Direct, a nurse-led telephone inquiry service and consumer health information web portal (UK Department of Health, 1999), an ‘information prescription’ initiative for people with long-term illnesses (UK Department of Health, 2006a) and the EPP. The EPP is a no-fee, generic ‘self-management’ programme for people with chronic illnesses, training such people to ‘ensur[e] that their knowledge of their condition is developed to a point where they are empowered to take some responsibility for its management’ (UK Department of Health, 2001a, p. 4). Topics covered include relaxation, communication skills, goal setting, information use and pain and medication management. Available across the UK, courses in the EPP involve weekly sessions taught by volunteer tutors (who are themselves living with chronic conditions). The courses, licensed from developers at Stanford University in the US, are highly structured. Through a transition to a social enterprise model, the programme is undergoing a significant expansion in capacity, extending to 100,000 course places per

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year (UK Department of Health, 2006a). This model, instituted in 2006, involves a move to an increasingly entrepreneurial business approach (UK Department of Health, 2006b). The analysis below focuses on the EPP model pursued between 2000 and 2006, a time that roughly corresponds to a second phase of health policy reform begun under the Labour government first elected in 1997 (Hawkes, 2006; Klein, 2006). In the dialogue about the EPP, patient empowerment is framed by related statements about health and illness. Because of the focus on people with illnesses, ‘health’ is defined from the perspective of people with chronic conditions and includes ‘soundness of body and mind’, accompanied by the greatest possible amount of physical capability and pleasure from life (Lorig et al., 2000). Health is positioned within a selfhelp discourse, ‘a healthy way to live with a chronic illness is to work at overcoming the physical and emotional problems caused by the disease’ (Lorig et al., 2000, p. 1). Health is viewed as both holistic and achievable, although characterised by sober and cautious goals for people with chronic conditions. The associated discourse of ‘illness’, highlighted as both a physical and emotional experience, is also positioned in the language of self-help, characterised by a perspective that goes ‘beyond the purely medical view to look at how the illness impacts on daily life’ (UK Department of Health, 2001a). Chronic illness is presented as a severe experiential burden for people who live with it and for society, where people with chronic conditions may be socially isolated. But illness experiences are positioned as changeable through the EPP, and thus they are also discussed in terms of measurable markers that can be used for evaluation. These evaluations usually rely on self-rating indicators, such as severity and numbers of symptoms, as well as uses of medications and health services (UK Department of Health, 2001a). The use of self-rating as a metric further reinforces a self-help discursive stance by highlighting the importance of the experiences of ‘expert patients’ rather than those of medical experts (Apthorpe, 1996). In the EPP model, the phenomenon of patient empowerment relies on two distinct discourses. In the first, a potentially seductive self-helpinspired narrative asserts that the oft-ignored experiential expertise of patients, long recognised informally by health professionals, can now be leveraged since the pursuit of health system reform has made services more flexible. People with long-term conditions are deemed to be experts on ‘how the disease affects them personally and interferes with their lifestyle’ (Wallace, 2001). This expertise is an ‘untapped resource’ that can help to improve the quality of people’s health care and their life in general (UK Department of Health, 2001a). Such a self-help

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Power to the Patient?

discourse thus draws implicitly on the patient-directed self-help movement and casts patients as the symbolic owners and leaders of the EPP initiative. However, it is important to note that this ‘expertise’ is not to be applied in variable, self-directed ways to interactions within the health system, as might be implied by the goals of self-help movements. Rather, it can be truly leveraged now that the EPP offers ‘proper training’ to transform this experiential expertise into ‘practical skills’ that patients can use to ‘take more control of their own health and treatment, to make more appropriate use of health and social services and be more empowered’ (UK Department of Health, 2001b, n.p.). Learned skills, however, are not, according to the EPP model, enough to empower. Instead, empowerment requires an increase in ‘self-efficacy’, a social psychological construct based in social learning theory that conveys a belief in one’s ability to do something (Lorig, 2006). Learning these skills contributes to self-efficacy, but the EPP also requires social persuasion, modelling and belief reinterpretation to be effective (Lorig, 2006). The second major discourse associated with the EPP is one of managerial effectiveness. In the EPP, statements about the process of turning experiential knowledge into practical skills as a form of empowerment rely heavily on metaphors that encourage people to view their illness as a project to be managed. We are told that all people ‘manage’ their conditions and that every form of adaptation is a ‘management style’ (Lorig et al., 2000). People with chronic illnesses are described as having common needs, each framed in active, administrative language: expert patients must act upon symptoms, make effective use of medication, manage work, access leisure activities and develop strategies to deal with the psychological consequences of their illness (emphases added) (UK Department of Health, 2001a). Empowering patients to meet these needs is accomplished by providing them with core self-management skills, such as problem solving, decision-making and resource utilisation (UK Department of Health, 2001a). One such skill is that of information seeking, positioned as something to be mastered, both in doctor–patient relationships (Lorig et al., 2000), as well as more generally (MacNair, 2005). Like the health promotion-based empowerment discourse associated with HealthyOntario.com, the notion that people will manage their illnesses like a project constitutes ‘health’, understood in this case as symptoms and disease progression, as being within one’s personal control. Also similar to health promotion discourse, it is assumed that people can control their bodies through rational conduct, such as action planning and cognitive symptom management. Hence, the messiness, unpredictability and uncertainty of chronically ill bodies and illness

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experiences are rendered amenable to managerial intervention, and thus, control. Again, this raises concern about potential blaming or judgement of people who are not able to slow disease progression, lessen symptoms or tidy up their emotions. The discourse of managerial effectiveness also helps to define ‘expert patients’ in terms that do not threaten health professionals, many of whom have been hesitant to accept the notion (Greener, 2001; Shaw and Baker, 2004). The EPP is said to complement medical care, and to exist firmly within the boundaries of the medical regime (UK Department of Health, 2001a). For instance, advocates of the EPP argue that people who participate are more effective in their meetings with doctors. One family doctor reports, ‘I notice that the quality interaction during consultations has improved. It is almost as though the patient has gained knowledge of consultation skills. They will have thought about what they want from you and they negotiate time and agenda’ (Campbell, 2005, p. 1). The managerial effectiveness discourse about EPP also asserts that attendees use medications effectively and are more likely to comply with treatment (Cooper, 2001; UK Department of Health, 2001c), and makes it clear that the EPP encourages people to follow medical advice and take prescribed medications (Lorig et al., 2000; Tadman, [n.d.]) or use medications and treatments ‘effectively’ (UK Department of Health, 2001a). In these ways, the managerial effectiveness discourse of the EPP lays out an agenda of work for chronically ill people, thus establishing the conditions under which people can be ‘good’ patients for their physicians. Indeed, several health sociologists have argued that an ‘expert patient’ identity promotes the acceptance of medical dominance (Fox and Ward, 2006; Fox et al., 2005), an observation that has also been made in relation to other patient empowerment initiatives in the UK (Salmon and Hall, 2003). Similarly, Wilson uses Foucault’s theories of power to argue that the EPP encourages people to increasingly subject their personal habits and activities to a medical gaze (Wilson, 2001). As well as being described as an experiential and social burden (as noted above), in EPP policy documents, chronic illness is also positioned as a problem that imposes a quantifiable burden on society, in the form of work days lost, as well as higher health care and service costs (UK Department of Health, 2001a). Indeed, it is argued that chronic illness-related expenditures comprise the largest portion of resources in the NHS budget (British Medical Association Patient Liaison Group, 2005). On a policy level, the UK government aims to bring down costs by reducing physician consultations and hospital stays, while also

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Tiffany Veinot

Power to the Patient?

improving the health of patients (British Medical Association Patient Liaison Group, 2005). Thus, as with HealthyOntario.com, a discourse of economic rationality positions chronic illness as a health policy problem. However, in the UK, this discourse appears to be somewhat less readily accepted than it has been in Canada, and UK government representatives repeatedly deny that the EPP is an initiative to facilitate cost-cutting. For example, the minister responsible claims that, ‘self-care is not an agenda in rationing medical care – it’s not about excluding, but providing services in a different way’ (UK Department of Health, 2003, p. 7). Here, the discourse of managerial effectiveness characterises savings as a positive by-product of efforts to improve the health and care of chronically ill patients. In other words, it is expressed in terms of process improvement rather than rationing. Nevertheless, government representatives repeatedly discuss potential service consumption reductions as a result of the EPP, often divorced from consideration of impacts on the health of participants (see, for example, UK Parliament, 2004). In this way, the managerial effectiveness discourse helps to conceal a general rationing agenda that has occasionally been acknowledged by government officials in other contexts (see, for example, Yamey, 1999).

Health, individual power and social control The analysis presented above reveals that both initiatives are situated in discourses of power that differ considerably from what a simple reading of patient/consumer empowerment might suggest. Health is discursively constituted as something that is under individual control. Broader power issues are reduced to matters of individual confidence, commitment and ability to engage in a programme of work, whether it be exercising to reduce risk of heart disease or adhering to a physician’s directions. In Ontario, health care is constituted as a fragile collective resource and, through a discourse of economic rationality, individuals are exhorted to be healthy and engage in risk reduction behaviours so as to reduce the burden on the health system. In contrast, in the UK, moral pressures to reduce use of the health care system are less pronounced. Patients are enticed with a self-help discourse that suggests that patients are the leaders of the EPP. However, individuals are encouraged to treat their illness as a project to be managed in a way that complies with medical regimes, thus extending the reach of medical power. In both initiatives, specific behaviours become moral imperatives, acting as a form of discipline that citizens are encouraged to follow, thus reflecting and enacting what Rose (1996) has called the ‘regime

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of the actively responsible self’ (p. 57). Drawing from Foucault’s (1991) concept of governmentality, Rose (1996) argues that in ‘advanced liberal’ nations, such as Canada and the UK, governance is increasingly accomplished through techniques that focus on ‘the regulated choices of individual citizens, now construed as subjects of choices or aspirations to self-actualization and self-fulfilment’ (p. 41). Accordingly, current forms of governmental rule rely on the discursive constitution of the ‘actively responsible self’ (p. 57), an idea which finds much application in discourses of patient/consumer empowerment. This suggests that patient/consumer empowerment initiatives typify a pervasive, yet subtle, mode of social control in Canada and the UK. Finally, in both countries, discourses of empowerment, whether managerial or health promoting in nature, may conceal the political economic realities of health care spending. In Ontario, this means that people are encouraged to be healthy so that they do not need to rely on a health care system in which citizens often encounter gaps in service. In the UK, this means living with the consequences of health policy that emphasises self-care to reduce resource usage by chronically ill people, even as it does so in the name of ‘effectiveness’. In sum, the discursive and material powers enacted through and within the discourses of empowerment-based health initiatives in Canada and the UK contradict the very notion of patient/consumer empowerment.

Note 1. The term ‘patient’ generally refers to people who are ill, whereas ‘consumer’ refers to people who are ill or healthy. Because I discuss policies aimed at each, I use the combined term ‘patient/consumer’.

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Tiffany Veinot

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Part II

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Lay Knowledge: The Missing Middle of the Expertise Debates Sarah Wilcox

A polarised debate has arisen within science studies, medical sociology and health communication over the possibility of ‘lay expertise’. Expertise, or the acquisition and development of specialised technical knowledge, has traditionally been seen as one of the foundations of professional authority. The concept of lay expertise has been used both narrowly, to refer to lay people’s active participation in the development of scientific and medical knowledge, and broadly, to refer to the general cultural stock of knowledge held by everyone in society. A backlash has arisen in response to the concept of lay expertise, primarily from scholars who have argued that the concept is an oxymoron because knowledge cannot simultaneously be specialised and held by non-specialists. Prior (2003), for example, has argued for ‘illness experience’ over ‘lay expertise’, because patients’ and caregivers’ knowledge is individual and idiosyncratic. These debates over expertise and experience involve questions about the process of knowledge production, the authority of scientific and biomedical knowledge, the professional roles of scientists and physicians and the meaning of expertise, knowledge and experience. In this chapter, I argue that rather than continuing to debate whether any knowledge can be considered expertise or whether lay people’s knowledge comes only from direct experience, science studies and health researchers should reconsider the middle ground between these two extremes: collective knowledge that may be widely available yet is still unevenly socially distributed. While some lay people do acquire specialised knowledge or participate in research in ways that are recognised by professionals, and support groups and social movements can also transform direct experience into collective knowledge and provide access to specialised ideas, many patients and caregivers remain 45

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Lay Knowledge

isolated and uninvolved in the production of knowledge. Rather than a polarisation between experience and expertise, this perspective yields a multi-dimensional knowledge landscape as a theoretical starting point. The debates over expertise concern not only standards for knowledge, but broader issues about the democratisation of medicine and science. Such democratisation involves questions of knowledge as well as occupational expectations and wage labour. Calls for lay participation in medicine and science require work from non-professionals, whether paid or unpaid. Such calls also create new occupational expectations for medical and public health professionals to engage with communities and to define the groups from whom participation is to be elicited. Rather than erasing the distinction between professional and non-professional, movements towards democratisation of medicine and science thus reconfigure the professional obligations and responsibilities of public health officials and researchers.

Debates over lay expertise Epstein’s (1995) study of AIDS activists and Arksey’s (1994) study of repetitive strain injury (RSI) support groups are two of the most widely cited in discussions of lay expertise. Epstein found that there were AIDS treatment activists who educated themselves about basic science, mechanisms of drug action and the system of drug testing, in the process learning ‘truly impressive amounts of technical information about virology, immunology, molecular biology and biostatistics’ (Epstein, 1995, p. 418). They created treatment newsletters where they summarised the results of medical research, attended conferences, came to sit on advisory committees of the National Institutes of Health and the Food and Drug Administration and eventually were able to present their arguments about the design of clinical trials at scientific conferences and in publications in scientific journals. The treatment activists were a small group, whose high level of technical knowledge distinguished them from AIDS activists, people with HIV or AIDS or gay communities in general (Epstein, 1995, 1996). The organisers of RSI support groups studied by Arksey did not appear to gain as much technical knowledge as the AIDS treatment activists, but they also read and disseminated articles from specialist medical journals. As Arksey (1994) explained, ‘many RSI victims became better informed about the disorder than their treating physician’ (p. 455). The RSI organisers were successful, in part, because they intervened in a dispute between orthopaedic surgeons and rheumatologists, ‘who were wrestling to control the medical

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definition of RSI, and consequently be the “legitimate” body to deal with the complaint’, by selecting which journal articles to disseminate to non-specialist general practitioners (Arksey, 1994, p. 458). From these two studies, the outlines of lay expertise begin to appear. First, the concept of lay expertise refers to the acquisition of specialised, technical knowledge through routes other than that of formal education, training or certification. Second, the lay experts Epstein and Arksey studied interacted with doctors and scientists. While their knowledge was not legitimated through certification, they acquired sufficient knowledge to participate in the social networks of those with such certification. Further, the fields in which lay activists participated were already fragmented, populated by various specialists and concerned with new, contested domains of knowledge. In both cases, legitimate authoritative knowledge was in the process of being established. And, in both cases, some doctors and scientists sufficiently recognised the lay people’s specialised knowledge that they were allowed to participate, whether formally through advisory committees and presentation at professional conferences, or informally, as when general practitioners accepted articles and reading lists from their patients. Finally, in both cases, it was not individuals who became lay experts, but individuals who were organised into collective groups; support groups in the case of RSI and activist groups in the case of AIDS. What do these examples tell us about lay expertise? First and foremost, that lay expertise must be analysed as a social phenomenon in which the central questions are whether, when and how non-professionals acquire specialised knowledge and manage to have that specialised knowledge recognised by certified professionals. And second, that the boundaries of domains of expertise are open to contestation, particularly in relation to new or contested illnesses. In situations that already involve ongoing discussions among multiple professional groups the question of which specialised knowledge should count may already be open. While these initial studies were narrowly focused on the acquisition of specialised, technical knowledge by lay people, the concept of lay expertise has been used more broadly by other academic authors and in health policy initiatives such as the UK’s Expert Patients Programme (see below). In this broader usage, the definition of expertise has shifted from specialised knowledge to that which denotes sufficient status for participation. For example, in a study of lay understanding of the new genetics, Kerr et al. (1998) argued that lay people have a ‘stock of knowledge’ about ethics, their social world and of science as an institution that they should be allowed to contribute to policy debates.

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These lay people’s accounts of the new genetics articulate rich and diverse understandings of medicine, science and society. Yet there is a strong resistance among lay people and professionals alike to recognize that this constitutes a form of expertise that places a positive value on their opinions and experiences. (Kerr et al., 1998, p. 52) Overall, Kerr et al. present a careful description of varying levels of salience of genetics and of the background knowledge that people bring to genetic policy issues. Yet their use of ‘expertise’ suggests that if ‘expertise’ is the word used to denote sufficient status for participation in discussions of science policy, then lay people’s general understanding should be labeled as expertise. The implication is that opinions and experiences must be labeled as expertise for them to be seen as having positive value and as contributing to discussion about social policy. In a similar vein, the UK National Health Service has developed an Expert Patients Programme in which patients with chronic illnesses, such as arthritis or diabetes, participate in workshops on ‘relaxation, communication skills, goal setting, and pain and medication management’, led by ‘volunteer tutors’ (Veinot, Chapter 3). The goal of the programme is to enable to patients to manage their own health better and to teach them how to communicate with their physicians to develop a treatment plan (Tyreman, 2005b). Although the initial NHS documents lacked a clear definition of the term ‘expert patient’, the underlying meaning seemed to be that patients had expertise in their own individual experience of illness, on which they could draw in making decisions about their care, and that this is a valuable source of information in discussions with their medical providers. In addition to this notion of patients as experts about themselves, the training programme also could be seen as defining the ‘expert patient’ as one who is an expert in being a patient, who has expertise in carrying out the role of a patient. As Veinot points out, this expertise is not to be used by patients themselves in their encounters with the health system, as might be implied by the goals of self-help movements, but is intended to encourage greater compliance with biomedicine. As in Kerr et al.’s (1998) use of the word ‘expertise’, the inclusion of the word ‘expert’ in the title of the Expert Patients Programme connotes status, indicating that patients have something to contribute to which medical providers should listen. In contrast with this expanding idea of lay expertise to include a common stock of knowledge and what patients know about themselves,

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there has also been a backlash against the very idea of ‘lay expertise’. Collins and Evans (2002), for example, make an argument for developing a ‘normative theory of expertise’, which could be applied in policy debates to adjudicate who should be able to contribute to the resolution of technical questions. In making this argument, they describe lay expertise as an oxymoron, citing a dictionary definition of a ‘lay man’ as someone who is not an expert, and asking: ‘If those who are not experts can have expertise, what special reference does expertise have?’ (Collins and Evans, 2002, p. 238). Collins and Evans argue that lay expertise is not ‘spread out through the population’, but ‘found in small specialist groups’, and therefore use the term ‘experience-based experts’ for ‘members of the public who have special technical expertise in virtue of experience that is not recognised by degrees or other certificates’ (p. 238). Thus, they recognise that there may be members of the public with expertise, while refraining from extending expertise to the public in general. At other points in their essay, Collins and Evans refer to lay people with expertise as ‘uncertified experts’ and acknowledge that professionals may derive some of their expertise from experience, making it unclear whether they are defining lay expertise as experience-based or by distinguishing between professionals and non-professionals. The division between experience and expertise has been drawn even more forcefully in response to the idea of expertise among patients. Drawing on Collins and Evans, Prior (2003) argued that lay caregivers of patients with Down’s syndrome and traumatic brain injury have only experience, not expertise. Based on his research on caregivers’ ability to recognise symptoms of Alzheimer’s disease, Prior writes: What lay people recognise and report upon is change, and not disease. Theirs is what might be called experiential knowledge. What is not experienced is not known. Thus lay carers have no knowledge of the full range of Alzheimer’s symptoms, and carer expertise is also limited in other ways. For example, it is invariably limited to knowledge of one or two cases. (Prior, 2003, p. 48) Experiential knowledge, for Prior, is limited and idiosyncratic, and therefore should not be considered expertise. Similar criticisms have been levied against the concept of the ‘expert patient’. For example, Tyreman (2005a) argues that ‘although patients may become knowledgeable about their disease, their expertise is confined to the narrow field of their own condition as they experience it’ (p. 155).

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Illness, according to Fulford (1999), is the (value-laden) experience that patients intuitively perceive as a medical problem and which normally prompts them to seek medical advice. The doctor may explain the phenomenon in biological terms, as a disease, but this ignores the subjective experience that informs the patient’s conviction that they are ill. (Tyreman, 2005a, p. 153) For Tyreman, NHS policy documents indicate that the expertise of the expert patient ‘refers to management of the illness rather than to the more technical aspects of understanding the disease’ and clarifying this distinction ‘prepares the way for effective collaboration between patient and practitioner based on a clear demarcation of areas of expertise and responsibility’ (Tyreman, 2005a, p. 155). Prior likewise argues that there has been a shift from ‘a focus on lay health beliefs and understandings to a focus on lay knowledge and expertise’ (Prior, 2003, p. 42). In referring to his own research on Alzheimer’s caregivers, Prior implicitly identifies illness experience as a domain of research for medical sociologists and anthropologists. If the biomedical is the domain of doctors, then the experiences of patients, pictured as isolated from each other, lie within the domain of the sociologist or anthropologist. Through interviews, the professional researcher can create a composite picture of experiences which otherwise would be anecdotal. What these critiques do not take into account is that part of what support groups and social movements do is to transform direct experience into collective knowledge, precisely because they allow carers and patients to have access to experience and knowledge beyond their own. For example, while some of the support group organisers described by Arksey (1994) had repetitive strain injury, some did not. What the support group members gained from participation was not simply additional experience, but the collective knowledge of the group that provided patients with a common theoretical framework within which to interpret their experience. When RSI sufferers brought photocopies of medical journal articles or reading lists to their primary care providers, they were precisely moving beyond their experience to the broader knowledge that has been produced about RSIs. Similarly, when AIDS activists learned standards for clinical trials and criticised methodologies

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In making these arguments, both Prior and Tyreman draw on the distinction, common in the social sciences, between biomedical diseases and subjective experiences of illness:

based on those standards, they had begun to engage in the kinds of activities that professional (educated, trained, certified) researchers do. This is in contrast to Kerr et al.’s (1998) argument that general knowledge should be seen as a form of expertise, and in concert with Collins and Evans (2002), that the knowledge obtained by the activists was specialised, not disseminated across the population as a whole. Even further, in both cases, what Epstein and Arksey studied was not simply the activities of lay people, but their activities with and within professional networks. If we think of the process of the production of knowledge as social, produced by groups according to commonly held standards, then it is this social recognition of activists’ expertise that is noteworthy. Jasanoff (2003) made this argument in her response to Collins and Evans’ essay on developing a normative theory of expertise, stating that the most interesting questions for social studies of knowledge are: how particular claims and attributions of expertise come into being and are sustained, and what the implications are for truth and justice; the intellectually gripping problem is not how to demarcate expert from lay knowledge or science from politics (though reflexive attempts to make such demarcations should be taken seriously). Such demarcations will keep being produced in any case, in the everyday work of scientists, citizens and institutions of governance. (Jasanoff, 2003, p. 398) Jasanoff is suggesting that debates over which knowledge claims should hold weight and who should be seen as having expertise are already key components of debates over social policies. Rather than making such demarcations, the purpose of science studies research is describing the processes through which such demarcations are made. The benefit of science studies, as Wynne (2003) argues in his response to Collins and Evans, is that refraining from being a ‘participant in the contestation of propositional truth’ allows one to raise questions about how ‘knowledge-claims also harbour and project tacit commitments to particular meanings or salient questions’ (p. 403).

Knowledge as social negotiation The production of knowledge is a central focus of research in science studies. Rather than prescribing how science should be done, or establishing what is true, science studies scholars are interested in studying empirically how science is accomplished through interactions among

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people. Epstein’s and Arksey’s analyses reflect these interests, in which the purpose is to describe what is happening in the social situation, rather than to evaluate what ought to be considered to be valid knowledge or who should be heard. In his critique of the concept of lay expertise, part of Prior’s argument was that ‘above all, lay people can be wrong’ (Prior, 2003, p. 53). Using controversies over MMR (measles, mumps, rubella) vaccinations as an example, he cited websites that contained erroneous information about vaccines and a British gastroenterologist who published a study purporting to show a link between vaccination and autism. Prior noted that although the gastroenterologist was a licensed physician, he lacked the training in epidemiology that would provide him with the expertise to judge ‘whether there is a link between MMR vaccine and a specific adverse event’ such as autism, and that ‘[i]t is an interesting question in itself, therefore, as to why his pronouncements have been so readily picked up and advertised by the press and radio, though that puzzle lies beyond the scope of this paper’ (p. 52). Yet it is this puzzle, of when, how and why expertise is socially recognised, that concerns science studies scholars. To unpack such puzzles, researchers in science studies have used ‘symmetrical’ approaches. The value of studying scientific controversies symmetrically can most easily be seen in historical studies. An asymmetrical account of a past scientific controversy would be one based on what is now seen as scientific truth. The difficulty with such an approach is that the analysis is shaped by the present day, by what the analyst knows about the outcome of the controversy, and therefore it would likely yield an inaccurate account of how the actors at the time perceived the controversy. In a symmetrical historical account, the question of which stance is now seen as scientifically correct is set aside in favour of analysing who the social actors were and their perceptions of what was happening, their interactions with each other and the social institutions and cultural milieu within which they acted (Shapin, 1995). In a similar vein, a symmetrical analysis of a contemporary scientific or medical controversy, whether the safety of nuclear power or of vaccines, would not focus on the question of who is right or wrong, but on describing the controversy itself, including what the actors themselves take to be knowledge. If researchers begin from their own standards of knowledge, they are likely to leave out what is happening from the perspective of social actors who may be operating according to other assumptions or standards. Returning to contemporary controversies over vaccines, an analysis of how lay people think about the safety of vaccines would include exploring what background information they

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bring to assessments of vaccinations and how they evaluate medical advice, scientific studies and social movement claims. For example, a recent New York Times article described a possible cluster of children with autism among Somali immigrants in Minneapolis. While the public health department was carrying out an epidemiological study to determine whether there was a higher incidence of autism among this group, Somali parents were contacted by an autism activist who encouraged them to resist vaccination and offered financial support for attending an anti-vaccination conference (McNeil, 2009). Public health researchers might be interested in studying subsequent events to find out whether parents were given incorrect information about vaccinations and how such inaccuracies might be countered in order to ensure that vaccination rates are maintained. For science studies scholars, beginning from an assessment of which actors’ claims were correct or incorrect would distract from studying how all of the social actors (parents, public health officials, anti-vaccination activists) make, assess and respond to knowledge claims. For the Somali parents, in particular, the resolution of the questions raised by a possible cluster of autism among their children would involve interactions among their own cultural ideas about health and medicine, the US biomedical models of vaccinations and autism and the claims made by existing anti-vaccination movements. While for public health officials the question of whether there is a connection between autism and MMR vaccinations has been answered negatively, for some of the participants in controversies over vaccinations that question remains open, and for others the question has been answered positively. Taking the perspective of one set of social actors involved in the controversy would foreclose the analysis of the social production of knowledge that is the work of science studies scholars. Finding out who is seen to have expertise is part of such analyses of the social production of knowledge. As Giddens (1991) pointed out, in modern societies people are confronted by multiple experts. In the example above, public health officials, epidemiologists, Somali community leaders and anti-vaccination activists might all position themselves and be seen by others as having authority due to their specialised knowledge. As Giddens writes, ‘attitudes of trust, as well as more pragmatic acceptance, skepticism, rejection and withdrawal, uneasily coexist in the social space linking individual activities and expert systems’ (p. 7). The social space between individuals and expert systems is not empty, however, but filled with social groups, communities, organisations and non-expert knowledge. While many health messages, whether public health announcements, media stories or internet websites, seem to be

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A fundamental sociological collectivism applies not just to describing the conditions in which it can rightly be said that individuals have knowledge but also to the means by which knowledge is acquired, applied, and changed . . . . When people confront the experience of their senses, they do so within an already existing structure of knowledge given them by their community and with a structure of purposes sustained by their community (p. 303). Thus, parents who hear conflicting information about the risks of immunisation are likely to weigh the content of that information both in terms of the degree to which they see the sources as authoritative and against what they already know. Noting the existence of non-expert knowledge is not to suggest that there are no differences between knowledge communities. Scientific knowledge communities are relatively closed, bounded and highly specialised, with strict standards for knowledge production. Non-scientific knowledge communities are more likely to be diffuse, open and disorganised; standards for knowledge are more likely to be lax and undefined. Expertise, according to this conceptualisation, requires a relatively tightly organised and bounded knowledge community. An acupuncturist and a doctor, in this model, both could have expertise, but whether their specialised knowledge and training is socially recognised would determine whether their expertise is authoritative in a particular social context. There is also sufficiently specialised knowledge that is not known by everyone, yet does not require particularly intense effort or training to acquire. For example, aspects of Somali culture that might be relevant to questions about autism and immunisation could be well known to many Somalis but not known to public health officials or to US anti-immunisation activists. Or, in debates over genetic policy, people from families with histories of genetic diseases might have more knowledge of genetics than people in general, even if that knowledge is not sufficiently specialised to be considered expertise (Kerr et al., 1998). Thus, there is a more complex landscape of knowledge than simple dichotomies between experts and lay people or between experience and expertise. As Schutz (1964) first pointed out in his essay on the

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directed towards atomised individuals, the actual recipients are members of social groups, live in neighbourhoods, have jobs, have had previous experiences with health and medicine and so on. As Shapin (1995) wrote in his summary of the sociology of knowledge:

‘well-informed citizen’, while there is ‘a stock of knowledge theoretically available to everyone’, this knowledge is unevenly socially distributed. In a knowledge landscape, the authoritativeness of knowledge claims is not assumed to be established in advance by professional training and certification, but is seen as an outcome of negotiations among a multiplicity of social actors, and therefore as a phenomenon open to study by social researchers. Studying this phenomenon requires further clarification of the meaning of knowledge, expertise and experience, and of the distinctions among them. In addition, while expertise may not be predetermined by professional status, social movements that call for the increasing democratisation of medicine and science lead to thorny questions about the lay/professional divide. Such democratisation creates new expectations for work from both professionals and non-professionals alike.

Knowledge, experience and expertise Following Collins and Evans (2002), we can retain a conception of expertise as specialised, technical knowledge that is difficult to acquire and therefore not known by everyone. Following the work of medical sociologists, we can recognise a realm of illness experience, which is not yet collective knowledge because it is particular, embodied and idiosyncratic. Rather than drawing lines between these realms, however, we can recognise that experience and expertise are not opposites, because tactile skill can be a form of expertise. Finally, lay knowledge is not simply ‘experience’ but is collective and shared, albeit not necessarily systematic or logical. Studies of the social production of knowledge can consider the meaning and significance of lay knowledges, rather than whether they are entirely true or accurate. Knowledge Broad cultural stocks of knowledge do not draw only on systematic, rational or scientific knowledge, but also on social ideas, religious beliefs, situated experiences and specific worldviews. That lay knowledge is frequently incomplete, unsystematic and linked to emotions and broader belief systems is one rationale given for scepticism about the democratisation of science and medicine. In Schutz’s essay, he compared the ‘well-informed citizen’ to both the ‘man on the street’ and to the expert (see also Barkardjieva, Chapter 11). In this typology, the expert’s viewpoint is ‘restricted to a limited field but therein it is clear and distinct. His opinions are based upon warranted assertions; his judgments are

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not mere guesswork or loose suppositions’ (Schutz, 1964, p. 122). The ‘man on the street’ has ‘working knowledge of many fields . . . his is a knowledge of recipes indicating how to bring forth in typical situations typical results by typical means’ (p. 122), a knowledge that is vague but practical, albeit guided by sentiment rather than reason. In contrast, the ‘well-informed citizen, while not an expert, arrives at reasonably founded opinions in fields which . . . are at least mediately of concern to him’ (Schutz, pp. 122–123). This citizen does not simply rely on ‘the irrationality of his unclarified passions and sentiments’, but decides ‘who is a competent expert’ and even ‘make[s] up his mind after having listened to opposing expert opinions’ (p. 123). At the beginning of his essay, Schutz presented this typology evenhandedly, pointing out that a person could be all three types simultaneously, in relation to distinct areas of knowledge. In her research on people’s use of the internet for health information, Bakardjieva (Chapter 11) found support for this typology, with some people using the web to find straightforward solutions to simple medical issues, others using it to look up health information, and a small subset researching health problems more deeply. Bakardjieva points out that, depending on people’s local circumstances and particular contexts, the internet can be used as a means to create distance from expertise, to enter into a meaningful dialogue with experts’ authoritative discourse or to work with experts in the treatment of a condition and/or to expand the horizon of existing medical knowledge about it. At the end of his essay, Schutz used his typology as the basis for a normative prescription, raising questions about democracy that are similar to those being discussed in contemporary debates over expertise: [The opinion of the man on the street], which is public opinion as it is understood nowadays, becomes more and more socially approved at the expense of informed opinion and therefore imposes itself as relevant upon the better-informed members of the community. A certain tendency to misinterpret democracy as a political situation in which the opinion of the uninformed man on the street must predominate increases the danger. It is the duty and the privilege, therefore, of the well-informed citizen in a democratic society to make his private opinion to prevail over the public opinion of the man in the street. (Schutz, 1964, p. 134) Here, Schutz makes explicit his preference for the reasonable, rational and systematic opinion of the well-informed citizen over the emotional, sentimental and passionate convictions of the man on the street.

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There are two problems with this division between the emotional person on the street and the rational citizen. First, the realm of lay knowledge is broad and includes judgements formed from multiple sources, including rumour, emotion, mass media and science. By definition, lay knowledge is not systematic or rational in the way that professional knowledge is. Yet, lay knowledge need not be rational and systematic to reflect reflexive engagement with the social world and, as with expertise, defining what should be seen as rational or scientific is a part of the social interaction that sociologists of knowledge are interested in studying. Second, focusing analysis on categorising knowledge as rational or irrational may lead the analyst to miss how lay people themselves understand how they know what they know and their reflexive engagement with their social world. Weisgerber’s study of lay constructions of sleep paralysis (Chapter 7) provides an illustrative example of these issues. Sleep paralysis is feeling paralysed while falling asleep or waking up, can involve hallucinations and nightmares and can be a terrifying or euphoric experience. Weisgerber argues that there is no shared language with which to discuss the meaning of sleep paralysis with the result that some who have experienced the condition construct the meaning of their experiences over the internet, rather than through consultation with medical professionals. Unsubstantiated knowledge, even that which is based in rumour and emotion, can also reflect people’s analysis of the world around them. For example, in Scheper-Hughes’ (1996) analysis of rumours regarding organ-stealing, stories about children being abducted from the street and taken for their organs were most prominent in countries where people had been ‘disappeared’ by paramilitary groups, and thus reflected real anxieties about actual events, as well as power differentials between the poor and the rich. Scheper-Hughes argued that a narrow focus on the question of whether or not such rumours were unfounded overlooked how they were linked to social realities. Such analysis can also be extended to fears of vaccination. A recent research study published in the Journal of the American Medical Association examined the content of YouTube videos on immunisation. The authors categorised videos as positive, negative or ambiguous, and categorised claims made in the videos as substantiated or unsubstantiated/contradicted by Canadian government guidelines on immunisation. They found that nearly half of the claims made in the negative videos were unsubstantiated while ‘none of the positive videos made scientific statements that contradicted the reference standard’ (Keelan et al., 2007, p. 2482). They concluded that doctors should be aware that patients might be getting incorrect information from video

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sharing sites on the internet. As in the case of organ-stealing rumours, however, the frame of correct versus incorrect information is overly narrow for understanding the circulation of fears about vaccination. For example, one claim that the authors used to categorise videos as negative was that ‘allegations [were made] of conspiracy or collusion between supporters of vaccination and manufacturers’ (p. 2482). While allegations of collusion between supporters of vaccination and manufacturers might be unsubstantiated for a particular vaccine, in the context of widespread concern about the influence of pharmaceutical companies on medical care, such claims might reflect an analysis of the pharmacomedical system that is not entirely inaccurate. For doctors’ interactions with patients, it might be more useful to understand the broader set of concerns that contribute to patients’ fears about vaccination than to know that many negative videos about vaccination contain incorrect or unsubstantiated information. For analysts to expect lay knowledge to be systematic and rational and to be free of emotion and prejudice is to hold such knowledge to a standard that it cannot meet and, possibly, to miss precisely the content that should be studied. Expertise In contrast to lay knowledge, expertise can be defined as specialised technical knowledge that is not widely socially distributed and is relatively difficult to acquire. As noted above, however, whether any particular form of expertise is recognised as authoritative or legitimate is an outcome of social negotiation. This definition recognises the distinctiveness of expertise, but refrains from defining it according to a pre-given set of norms. One common criticism of expertise in relation to democracy is that it is too narrow. For example, Schutz wrote: The expert starts from the assumption not only that the system of problems established within his field is relevant but it is the only relevant system. All his knowledge is referred to this frame of reference which has been established once and for all. He who does not accept it as the monopolized system of his intrinsic relevances does not share with the expert a universe of discourse. (Schutz, 1964, p. 130) Similarly, in his response to Collins and Evans’ argument for a normative theory of expertise, Wynne (2003) argued that democratisation of science has to do with broadening the set of issues and questions that

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are seen as salient. Whether the issue is pollution, genetic engineering or vaccination, the concerns that the public sees as relevant are more extensive than those likely to be seen as relevant by a specific set of experts. Like lay people, however, experts are also reflexive social actors who may draw on multiple sources of knowledge in addition to the specialised technical knowledge from the discipline in which they were trained. This means that we cannot presume a uniformly narrow perspective. For example, Gingras and Aphramor (Chapter 6) raise the possibility of the reflexive professional in their chapter on empowerment and compliance in dietetic practice. They argue that the central work of dietitians has become weight management. Under neo-liberalism, ‘empowerment’ now involves sharing power and authority with patients and encouraging them to develop self-esteem, but the ultimate goal remains ensuring compliance with dietitians’ advice. Gingras and Aphramor are critical of the emphasis of the dietetic profession on nutrition science and call instead for feminist embodiment in dietetic education and practice. Thus, in addition to critiquing neo-liberalism and the empowerment/compliance model, Gingras and Aphramor demonstrate reflexivity in professional practice by drawing on ideas from other disciplines and lay social movements to reflect on the constitution of their domain of expertise. Their analysis reveals that the role of professionals in relation to democratisation and lay knowledge is fertile terrain for investigation. Before turning to those questions, however, the matter of defining ‘experience’ remains.

Experience As discussed above, Prior (2003) and Tyreman (1995a) defined lay knowledge as experiential, and therefore limited and idiosyncratic. Collins and Evans (2002) argued that both experts and lay people can have experiential knowledge, while referring to lay experts both as ‘experience-based experts’ and as ‘uncertified experts’. In relation to knowledge, ‘experience’ is often used to mean knowledge gained directly or through hands-on work, rather than through written texts or abstractly from other people. Such hands-on work is frequently a requirement of professional certification, as when medical professionals must complete a set number of clinical hours as well as written exams. Further, experience with a broad set of cases can legitimise professionals’ expertise, and distinguish senior practitioners from both new professionals and lay people: ‘the experienced colleague may be

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able to cope with uncertainty and unfamiliar presentations of familiar problems far more competently than the newly qualified’ (Tyreman, 2005a, p. 155). In addition, lay people acquire knowledge from multiple sources, not only through direct experience. Studies of activist experts have typically noted the activists’ acquisition of specialised technical knowledge rather than their direct experiences of illness. ‘Illness experience’ has been a primary area of study within medical sociology, but here it has been defined broadly as ‘a window into the lifeworlds of people with a wide range of different diseases’ (Lawton, 2003, p. 24). Illness experience as life-world encompasses both the individual’s direct embodied experience of illness and the social world within which and through which they experience it. Recognising that illness is phenomenological and embodied means that we experience illness within a specific body, through reflexive interaction between our bodies and cultural ideas and meaning systems. What this reflexivity means is that patients’ subjective experience is not only based on their own embodiment, but also on ideas from medical science, other people who are ill and the culture as a whole. While acknowledging Lawton’s point that studies of illness experience may have neglected the physical body, studies of illness experience are also studies of reflexive subjects who are necessarily drawing on knowledge from beyond their own direct individual experience. Finally, while the anecdotal and idiosyncratic nature of individual experiences may cause the knowledge gleaned from them to be seen as narrow and limited, in the public sphere individual experience is sometimes granted legitimacy. Just as the professional expert has knowledge of a narrow specific field that is inaccessible to most other people, patients with serious illnesses are sometimes seen as having a set of unique and specific experiences upon which they can draw to speak authoritatively. This narrowness and specificity is what can cause an individual’s experience of illness to be seen as a form of expertise, although it is not expertise in the traditional sense of specialised technical knowledge. These variations in the meaning of ‘experience’ suggest a need for more precise and careful use of language. ‘Illness experience’ should be understood to refer broadly to life-world, including variations in individual embodiment and entanglement with biomedical knowledge. For studies of social debates over knowledge claims, the division between professionals and non-professionals is more precise than a simplified polarisation between expertise and experience. Movements towards increasing democratisation of medicine and science have created new kinds of work within and across this division.

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Many studies of lay expertise have been based on movements initiated by lay people who have sought to bring attention to health problems and to participate in the production of knowledge. As Epstein (2003) writes, ‘participation [in scientific debate] becomes more likely when groups build effective organisations, construct new collective identities and promote groundswells of mobilisation and collective action’ (p. 173). In addition to the AIDS activists and repetitive strain injury advocates studied by Epstein and Arksey, there are numerous examples of movements in which lay people have worked to bring attention to environmental health problems (Brown, 1992; Brown et al., 2003; Corburn, 2005). The motivation behind efforts by environmental activists to engage in lay epidemiology and in citizen science has often been to bring professional attention to issues that have been overlooked. Studies of environmental justice movements, in particular, have considered how environmental problems in poor and minority neighbourhoods have received less attention from public health officials. In these movements, the acquisition of expertise by non-professionals is a route by which those without material resources or educational credentials can gain standing to be heard and the unpaid labour of activists creates leverage to compel labour from paid professionals. Yet calls for greater citizen participation in medical research and policy have led to increasing expectations that such involvement will be routine, rather than emerging out of activist movements. Such routinisation creates seeking out and structuring community involvement as a new set of responsibilities for health care professionals, public health officials and researchers. In turn, these responsibilities lead to questions about paid and unpaid work, how representation of communities is defined in practice and the role of social scientists in defining groups and producing knowledge. When activist movements emerge to make claims on health officials and researchers, they are generally seen to be representing themselves. For example, the Little People of America, an advocacy organisation representing those with dwarfism, has become a gatekeeper between researchers and potential research subjects, requiring scientists to participate in a shared database (Taussig et al., 2003). Yet questions arise about which lay groups or organisations can represent and speak for particular communities or the public (Epstein, 2003). Advocacy organisations are themselves political, and may not directly represent the views of others in the community. For example, disability advocacy organisations in California uniformly opposed a law permitting assisted suicide,

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Democratisation, professional expectations and work

Lay Knowledge

although a community-based research study conducted by researchers and people with disabilities found a far wider range of views among those with disabilities than the public stance taken by the advocacy organisations (Fadem et al., 2003). As expectations for lay participation become routine, these questions of selection and representation intensify. Paradoxically, when a groundswell of mobilisation has not emerged, creating and structuring opportunities for lay participation may become an occupational obligation for paid professionals. For example, when social movements or community organisations do not already exist, professionals may create groups for participation in research or oversight. Reardon’s (2005) study of the Human Genome Diversity Project provides a particularly nuanced example of this. As she documented, the populations that geneticists hoped to study did not map neatly onto social groups, requiring scientists to construct groups from whom they sought participation and consent. The move towards democratising medicine and science also involves seeking involvement of the public as a whole, which raises similar issues of representation. One format for public input has been the citizen jury, in which representative members of the public are asked to deliberate questions of science policy, in order to contribute their voices to the debate. By the late 1990s, ‘over one hundred juries had taken place in the UK on issues as diverse as Northern Ireland educational reforms, health rationing, waste disposal and genetic testing’ (Wakeford, 2002, p. 3). Yet, as citizen juries have often been set up by local governments, questions have arisen over ‘the extent to which many of them achieved representativeness in their selection of participants, transparency in their provision of information, or independence’ (Wakeford, 2002, p. 3). The rationale for citizen juries is the need for involvement of ‘the public’, broadly conceived. A similar conception of the public can be found in websites designed to allow citizens to share their experiences with and provide feedback on the health care system. For example, Adams (Chapter 12) found that such sites require work from both the participants and the professionals who set them up, and that the information they provide is mediated by professionals. According to Adams, sites that invite citizens to provide reviews of health services and hospitals (as in NHS Choices, a UK website) ‘skill reflexivity as civic practice, with specific prescriptions for work’. Individuals are not only expected to monitor professionals and institutions, but to attend to the sites to monitor others’ opinions in order to make their own informed

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decisions. At the same time, the information presented on these sites is not unmediated. The professionals who create them set up the structure for comments, review comments before they are posted and provide standard ratings systems. Thus, while websites that allow individual citizens to provide feedback and stories may be seen, like wikis and other forms of internet media, as new forms of collective knowledge production, they are also sites of interaction between professionals and non-professionals, involving both paid and unpaid labour. The expertise debates have focused on where to draw the line around expertise, often with an explicit or implicit assumption that lay expertise threatens professional authority. As the examples in this section demonstrate, movements towards democratisation of science and medicine do not necessarily involve a smaller role for professionals. In the absence of organised social movements, it is public health officials and researchers who are called upon to establish processes for lay participation. While activists often do unpaid work in order to compel action by paid professionals, new structures for participation set up by paid professionals often create new forms of unpaid labour for lay people.

Conclusion Nuance is lost when, in a democratic spirit, expertise is expanded to include general knowledge that any member of the lay public might bring to the table. Yet nuance is also lost when the broad landscape of knowledge is reduced to direct personal experience. This landscape includes the general cultural stock of knowledge, as well as knowledge that does not require specialised training or certification, but is unevenly socially distributed. The production of knowledge is a social process, so that expertise is a negotiated outcome of social interaction. For those studying the sociology of knowledge, the key issue is not where the line should be drawn between experience and knowledge, or between knowledge and expertise, but understanding the social processes through which knowledge is produced and recognised. Movements towards democratisation of medicine and science are shifting professional boundaries and changing expectations of work from both professionals and non-professionals. Increasingly, lay people are expected to receive and process information about their health, and lay advocates are seeking to participate in policy setting and research. Paradoxically, setting up processes for lay participation in research and policy settings is increasingly becoming part of the occupational and professional responsibilities of public health officials and researchers.

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Lay Knowledge

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This involves not only opening the doors to lay people, but often defining the communities and groups from whom representative participation is being sought. These changes are less the erasure of the divide between lay people and professionals than a reconfiguration of roles and responsibilities.

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The Rhetorical Work of Informed Choice in Midwifery: Situated Knowledges and the Negotiation of Health Care Decisions Philippa Spoel

This chapter explores the communicative dimensions of health care work in midwifery from a rhetorical perspective. Like other authors in this book, I am interested in how contemporary concepts and practices of health information, communication, empowerment and expertise intersect with changing ideas about the non-material work expected of care recipients and providers. I take up these issues through a brief rhetorical analysis of ‘informed choice’ conversations in an Ontario midwifery practice. As Salmon (Chapter 9) underlines in his discussion of cancer care communication, health practitioners do not follow simple rules about providing information to patients but rather they ‘join with the patient in intricately managing dialogue to achieve and balance potentially conflicting aims’. To find out how midwives and their clients (the term used by the Ontario midwives for women receiving care) manage the intricate dialogues and potentially conflicting aims of informed choice, I and my colleague Susan James have undertaken a pilot study of midwife– client conversations in an Ontario midwifery practice. This study builds on previous research on the rhetorical–ideological tensions in Ontario midwifery’s policy discourse about informed choice (for example, Spoel, 2005, 2007; Spoel and James, 2003). Here, I draw on excerpts from one of these conversations to explore how the midwives and client negotiate the rhetorical process of informed choice. Working from the premise that informed choice is a key communicative activity in Ontario midwifery care, and that it constitutes a significant form of immaterial health care labour for both midwives and their clients, my analysis focuses on how the participants in this situation discursively enact the 65

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The Rhetorical Work of Informed Choice in Midwifery

Informed choice: feminist principle or neoliberal technology? The principle of informed choice reflects midwifery’s roots in the women’s health care and alternative birth movements of the 1970s and 1980s. As Bella (Chapter 2) explains, the women’s health movement countered the dominant pathologising approach to life events such as pregnancy and childbirth. According to Rushing (1993), the values of the North American midwifery movement coincide with those of the women’s health movement, emphasising women’s individual responsibility for health, a concern with existing structures of health care provision and a desire to increase the ‘range of . . . therapies, types of providers, and styles of practice’ available (p. 58). For Willard, informed decision-making is an integral feature of the ‘egalitarian partnership’ between care-provider and care-receiver that is at the heart of the alternative and women’s health care movements: ‘mutual respect and understanding’ empower women to become informed and take control of their own care (Willard, 2005, p. 131). From a feminist perspective, ‘informed choice’ is connected to empowerment conceived, as Bella suggests, as a political process to engage women in sustaining their own and their children’s health, and thereby the health of their communities. For the midwives, clients and midwifery supporters who lobbied the Ontario government during the 1980s to grant midwifery self-regulated professional status, informed choice was an important principle: it encapsulated the premise that women have the right to make the informed choice to have midwives as their caregivers. Since midwifery became a self-regulated health profession in 1991, informed choice refers, not to women’s right to midwifery care, but rather to women’s right to act as empowered, knowledgeable decisionmakers. It is one of the three guiding principles for the Midwifery Model of Care in Ontario developed by the College of Midwives of Ontario, which describes informed choice as ‘a decision-making process which relies on a full exchange of information in a non-urgent, non-authoritarian, co-operative setting’ (College of Midwives of Ontario, 2000a, p. 5). This process is intended to encourage ‘the woman to actively participate in her care . . . and make choices about the manner in which her care is

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tensions and complexities that structure informed choice. In particular, I consider the ways in which the midwives and clients negotiate normative expectations about the kinds of ‘information’ and ‘self-care’ work that the principle of informed choice entails.

provided’ (p. 5). This language suggests that informed choice means more than health professionals simply providing patients with information; informed choice is a supportive, relationship-building process that allows midwives to implement key aspects of their women-centred philosophy of health care. In this sense, the midwifery principle of informed choice can be seen as supporting the kind of ‘facilitating environment’, that Salander and Moynihan (Chapter 8) call for in health care, an environment that attends not only to information provision but to ‘connection, closeness, competence, continuity and personal acknowledgment’. As James (1997) explains, a holistic approach to informed choice in midwifery sees professional relationships ‘as reciprocal partnerships rather than authoritarian’ (p. 183). This approach embraces diverse, situated forms of information and knowledge: ‘the experience of the particular woman is the centre point for decision-making rather than a generalised norm; and many forms of knowledge beyond empirically derived theory are considered not only valid but essential’ (James, 1997, p. 183). Midwifery deconstructs the boundaries between ‘expert’ and ‘lay’ knowledge (Wilcox, Chapter 4), not by assuming that they are symmetrical but by recognising that women and their midwives contribute a range of different knowledges and experiences to the discussion. Midwifery respects ‘the variety of personal and cultural meanings which women, families and communities bring’ (College of Midwives of Ontario, 2000b). However, while the midwifery principle of informed choice can be interpreted as supporting an alternative counter-discourse of health care, it also participates in Western society’s dominant neoliberal health care discourse. According to Petersen (1997), ‘neo-liberal rationality emphasises the entrepreneurial individual, endowed with freedom and autonomy, and the capacity to properly care for him- or herself’ (p. 194). It ‘calls upon the individual to enter into the process of his or her own self-governance through processes of endless self-examination, selfcare and self-improvement’ (p. 194). As suggested elsewhere in this volume, neoliberal ideology manifests in current discourses of patient ‘autonomy’ and ‘empowerment’. Central to these discourses is the problematic assumption that providing health care consumers with information empowers them to make their own choices (see Henwood et al., Chapter 13; Petersen and Lupton, 1996; Shaw and Aldridge, 2003; Veinot, Chapter 3). The neo-liberal discourse of ‘autonomy’—as Salander and Moynihan (Chapter 8) argue—presumes a reductive sender–receiver transmission

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model of communication. In mainstream conceptualisations of informed choice, the health care provider is responsible for transferring objective, biomedical information to the health care recipient, who will then be enabled to make an autonomous, rational informed choice about his or her course of care (Gwyn, 2002). Williams et al. (2002) caution that this model fosters a professional ethos of disengagement and scientific neutrality that may negatively affect the caregiving relationship, while Petersen (1999) argues that the current discourse of patient ‘autonomy’ and practitioner ‘non-directiveness’ reinforces a scientistic ethos of medico-scientific definitions and power relations. As Gingras and Aphramor (Chapter 6) and Veinot (Chapter 3) suggest, ‘empowering’ patients with information works primarily as a technology of compliance (see also Henwood et al., 2003). In relation to women’s health care, Lippman (1999), Sherwin (1998) and Rebick (1993) critique the rhetoric of individual choice for fostering illusions about the self-determination women really have in health care situations and for obfuscating rather than dismantling social inequities. According to Lippman, although ‘choice’ is a key principle of the women’s health movement, the consumerist discourse in which it is embedded ‘encourages and reflects an atomised, individualised view of social life’ (p. 283). Salmon (Chapter 9) argues that the assumption that providing patients with information will ‘empower’ them to become full ‘partners’ in decision-making, thus supporting their ‘autonomy’, belies the ethical complexity of health care communication and relationships, and fails to consider autonomy as relational rather than individual. Within a neoliberal framework, informed choice supports an ideology of ‘healthism’, which posits that the individual has choice in preserving his or her physical capacity from the event of disease. In the event that one is unable to regulate one’s own lifestyle and modify one’s risky behaviour then this is, at least in part, ‘a failure of the self to take care of itself’ (Petersen, 1997, p. 198; see also Shaw and Aldridge, 2003; Veinot, Chapter 3). In the mainstream view of pregnancy, as Lupton (1999a) observes, the normative expectation that women have a moral responsibility to become informed about ‘risk’ and to self-regulate their health is doubly pronounced because women must care for themselves in order to care for their foetuses (see also Lane, 1995; Lupton, 1999b): Many of the discourses of risk that surround the pregnant woman suggest that it is her responsibility to ensure the health of her foetus, and that if she were to ignore expert advice, she is culpable should

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her baby miscarry or be born with a defect. The pregnant woman, therefore, is positioned within a web of surveillance, monitoring, measurement and expert advice that requires constant work on her part: seeking out knowledge about risks to her foetus, acting according to that knowledge. (Lupton, 1999a, pp. 89–90) Consistent with its pre-regulation roots as an alternative, nonbiomedical form of health care, the profession of midwifery in Ontario has resisted this risk-based, surveillance discourse. Nonetheless, our research shows that current midwifery practice combines elements of this dominant discourse with alternative ways of knowing and communicating to craft its own distinctive, hybrid version of expert information-knowledge. As McKenzie and Oliphant (2006) explain, ‘[b]ecause midwives are both discursively and organizationally located at the intersection between biomedical authority and women’s embodied wisdom, both of these discourses are present in the information they provide’ (p. 13). Midwifery care supports the normative expectation that women will use this information to make responsible choices. However, what counts as a responsible choice and appropriate self-care may not always conform to mainstream biomedical expectations.

A rhetorical approach to informed choice I approach informed choice as a significant, emerging genre of health care communication, a genre that reflects and (re)constructs the health care knowledges, decisions and values negotiated during the caregiving process (Schryer and Spoel, 2005; Spoel and Young, 2003). Rhetorically speaking, informed choice is an important mode of symbolic action in midwifery care: it is a way that human agents use language to form attitudes and induce actions in other human agents (Burke, 1969). By contrast with a linear, transmission model of communication, a rhetorical perspective presumes that all human communication— no matter how seemingly objective, neutral or factual—has a suasory dimension. As Katz and Miller (1996) explain, the transmission model conceives of communication as the linear transfer of information from senders to receivers via channels. By contrast, rhetoric is a conceptual approach that examines the suasory dimensions of language and its use in particular situations . . . . It sees

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influencing as the fundamental communicative relationship, not informing, because information is never pure but always comes shaped, selected, and intended in some way. It thus recognizes the important role that values and affect play in all aspects of a decision. (Katz and Miller, 1996, p. 132) Even—or perhaps especially—in situations where human actors seek to communicate ‘pure’ information that does not influence the audience, rhetoric concerns itself with the persuasive aspects of these communicative activities. According to Segal (2005), taking a rhetorical approach to the study of health and medical communication means identifying the persuasive elements of the discourse and asking, ‘Who is persuading whom of what?’ and ‘What are the means of persuasion?’ (p. 2). These questions position informed choice as a dynamic, situated, suasory process of meaning-making and decision-taking in which midwives and their clients engage as rhetorical actors. By contrast with the sender–receiver view of clinical communication, a rhetorical approach conceives informed choice as an intricate and evolving mode of dialogue during which the rhetorical participants simultaneously draw on, (re)articulate and potentially reconfigure their situated knowledges in order to negotiate health care decisions. This suasory–epistemic process constitutes a significant and challenging form of health care work for midwives and their clients. Although each informed choice conversation enacts the participants’ health care knowledges and decisions in unique, localised ways, each encounter is also shaped by (and potentially reshapes) the broader context of midwifery regulation and neo-liberal health care. This context creates normative expectations and poses challenges about the kinds of knowledge and decisions that individual midwives and women may articulate. As Segal (2005) notes, ‘the rhetor is not only an agent . . . but also an agency—for a language that is already in circulation’ (p. 14). When they engage as rhetorical agents in their specific enactments of informed choice, midwives and clients also function as agencies for the (re)enactment of macro-level health care discourses and ideologies. The relationship between micro- and macro-level discourses is reciprocal and dynamic: the rhetorical actions of individual midwives and women in conversation simultaneously take up, reconstitute and potentially resist the broader discourses and ideologies of health care that (uneasily) shape informed choice.

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In this chapter, I consider the kinds of knowledge, decisions and care of the self that informed choice implies by thinking about it as a form of health care work in which both midwives and clients (need to) engage. It is, I propose, an immaterial labour of suasory symbolic action that occurs through conversations between midwives and their clients. Far from being a straightforward process of information provision (by the health professional) and ‘rational’, ‘autonomous’ decision-making (by the client), informed choice conversations reveal the complex, situated, and rhetorically strategic ways in which care-providers and care-receivers share knowledges and negotiate decisions. As Salmon (Chapter 9) notes, despite efforts to reduce health care communication to a narrow set of teachable, discrete, generic ‘skills’, the reality of clinical practice shows a much more intricate, multi-functional trajectory of communication strategies that are situationally responsive and variable, emerging out of the local rhetorical (inter)actions of care-receivers with care-providers. In the midwifery conversations that we have researched, even though the clients may not say as much nor be as obviously suasory as the midwives, they nonetheless function as significant rhetorical agents in the knowledge- and decision-making process. Expectations about what counts as legitimate information, knowledge, reasons and evidence; responsible decisions; and appropriate self-care are actively negotiated and situationally re-configured. This rhetorical process constitutes an important and challenging dimension of the health work that Ontario midwifery’s principle of informed choice expects both midwives and their clients to undertake. The following discussion focuses on the conversational enactment of two informed choice topics during a 30-minute midwifery appointment that we recorded for our pilot study. This visit occurred when the woman, a repeat client, was approximately 6 months pregnant. She met with both a student midwife and an experienced, registered midwife (the ‘main midwife’); the inclusion of student midwives in health care visits is common in Ontario. The client had met previously with the main midwife but this was her first meeting with the student. The main midwife was one of three midwives on the client’s ‘team’ but she was not the ‘primary’ midwife. (At this midwifery practice, similar to most Ontario practices, each client has a team of midwives who share the caring process. Normally, one midwife is assigned as the ‘primary midwife’ but two other midwives also form part of the client’s team.) The client’s mother was present but did not actively participate. The researchers were

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Enacting the rhetorical work of informed choice

The Rhetorical Work of Informed Choice in Midwifery

absent, but the participants knew that the visit was being recorded. The two conversational topics that I focus on are nutritional habits and circumcision, each lasting between 5 and 6 minutes. The conversation about circumcision occurred before that on nutrition; however, I discuss the nutrition episode first as it enacts a somewhat more straightforward, commonplace dimension of the discourse of (self)health work. In both conversations, I am interested in the kinds of knowledge and reasoning processes that the midwives and the client employ to negotiate an ‘informed choice’. They engage in dynamic suasory practices that (re)create knowledges, shape attitudes and influence actions. Although the midwives’ efforts to shape the client’s knowledges, attitudes and actions dominate, the client’s explanations of her situation and justifications for her health care/self-care decisions and actions constitute an essential dimension of the rhetorical work accomplished during this encounter. Informed choice conversation about nutritional habits Eating healthily has become a normative expectation for women’s self-care during pregnancy. In the midwifery context, nutrition is an informed choice topic in that midwives work to facilitate women’s abilities to make healthy choices. Analysing how this rhetorical process of facilitation occurs in this particular health care encounter is especially interesting because the client appears partially resistant to the selfregulatory expectations within the midwives’ knowledge–advice. For the midwives, a key challenge seems to be how to communicate professional knowledge and advice in a way that facilitates but does not overtly prescribe the client’s ‘informed choice’; for the client, a key challenge seems to be how to filter and re-contextualise this expert knowledge–advice in ways that make sense for what she knows about herself and her life situation. The client initiates the topic of nutrition by asking the midwives about her ‘craving’ for iced tea (the sugar-based powder mix, not ‘real’ iced tea). The way she raises the issue signals her ambivalence about placing it under the midwives’ scrutiny. Rather than articulating the question as her own, she frames it as her husband’s (he is not present): ‘Yeah, that’s actually one of my questions my husband has. I crave ice tea.’ This phrasing suggests that she may not really wish to ask about her ‘craving’ but that she is doing so on her husband’s behalf, presumably because he is concerned about her consumption of an unhealthy beverage.

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The client’s husband plays a crucial role in her explanations and justifications for her health care actions and decisions in both conversational episodes. This referencing foregrounds the degree to which the client’s information-seeking and decision-making are not wholly autonomous, self-determined activities but instead are structured within, as Lippman puts it, ‘an intricate web’ of relationships and responsibilities (1999, p. 285). Additionally, though, her references to what her husband thinks and wants function as a rhetorical resource in her negotiations with the midwives about her decisions and actions. By displacing the motivation for the ice-tea question onto her husband, the client creates space to not fully accept the midwives’ recommendations (since, technically, it is he—not she—who has requested their expert view). Initially, the midwives suggest a simple solution: an alternative beverage. But the client rejects this, affirming that ‘The only thing I want is that [tea]’. Realising that helping the client to control her unhealthy desires requires more than simply offering an alternative, the midwives change rhetorical strategy and embark on a much fuller discussion of the topic. They work to establish the boundaries of their professional expertise in relation to the client’s lay knowledge by developing an accessible yet scientific physiological explanation of how the body metabolises sugar less effectively during pregnancy and then linking this to the client’s above-average weight gain: Student Midwife: Um, so you’ve gained six pounds in 5 weeks, 4 weeks, which isn’t, like, we usually, like a pound a week is a good rate to be going, but you don’t want to be gaining six pounds between every visit, that could get up to be a lot of weight. Um, what do you think you could do to try and change your beverage options? ‘Cause, it, one of the reasons we’re concerned is, um, taking in all that sugar, your body metabolises sugar different in pregnancy and it tends to stay in your blood longer, you produce more insulin to try and di-ah, metabolise it, but, it just becomes this vicious cycle between lots of sugar and lots of insulin, and lots of sugar also, um, means lots of food for the baby so, um Main Midwife: Yeah, one of the things that we have to look at, is you have to appreciate how your body works when you’re pregnant and your body doesn’t. Our, our insulin isn’t as effective at like breaking the glucose down so you end- end up having a higher circulating Client: Okay Main Midwife: blood sugar. Our brains need a lot of, of sugar for energy, um, but it needs to be broken down and used effectively

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and that’s why a lot of women get that pregnancy fog because their body’s not using glucose effectively Client: Okay Main Midwife: When you have a large dose of glucose, let’s say you have a pop, or a chocolate bar, or something like that, your body metabolises a very small amount of it, and the rest of it just goes on as unused, it floats around in our body. Client: Okay Main Midwife: You can excrete it eventually in your urine but a lot of women won’t. Um, you will eventually pack it on as unnecessary weight, and, I mean, we don’t really care what you weigh. Client: (chuckles) Main Midwife: But, we don’t want you to develop high blood pressure in pregnancy, and certainly as you put on more weight, it’s harder for your heart to circulate blood through that tissue Client: Okay Main Midwife: So your risk of having high blood pressure does go up, and then, um, you can actually push your body to the point where you actually become completely resistant to breaking down glucose and that’s where some women develop what’s called diabetes of pregnancy or gestational diabetes . . . . By explaining the physiological reasons for avoiding a high sugar intake (rather than simply naming the risks of this practice), the midwives provide substantive, medico-scientific information that the client can use to make ‘good’ decisions about her self-care. As the main midwife explains, ‘knowing that stuff can help you to, when you look at the iced tea . . . think about all those things’ and make ‘good choices’. In this sense, the midwives demonstrate respect for the woman’s right to be well-informed about how her body functions, as well as trust in her abilities to understand and act on this information—rhetorical actions that construct midwifery’s distinctive model of maternity care. At the same time, this explanation enacts features of mainstream discourses of risk and weight-management, similarly to the ‘scientised realm’ of nutrition and weight management that Gingras and Aphramor (Chapter 6) identify as central to dietitians’ professionalisation. Although it begins from the woman’s particular situation (her weight gain), its primary discourse is one of abstract expert knowledge and generalised norms. Starting by classifying her weight gain as above average, the midwives’ expert knowledge enacts a common discourse of risk-profiling that constructs individuated assessments through the

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framework of generic norms derived from population health studies. As Lupton (1999a) explains, ‘the concept of risk, as it is developed through normalisation, initially deflects attention away from individuals and their behaviours towards aggregates or populations. The information gathered about risk from population data, however, is then often employed in advice to individuals about how they should conduct their lives’ (p. 88). Here, the midwives articulate knowledge about the risks associated with excessive weight gain and inefficient glucose metabolisation for the whole ‘population’ of pregnant women (that is, the generic ‘you’ during most of this exchange) as a strategy for identifying the specific risks that this individual woman may face (that is, the personalised ‘you’ of ‘you did grow a pretty big baby the first time around’). The degree to which the client finds this explanation compelling remains ambiguous, however. Her repetition of the minimal response token ‘okay’ functions politely to support the continuation of the midwives’ scientific explanation but does not indicate substantive acknowledgement of or engagement in their information and implicit advice (Heritage and Sefi, 1992). Perhaps sensing that they have not fully persuaded the client to reduce her consumption of ice tea, the main midwife concludes the episode with more direct, prescriptive advice: Main Midwife: So, a couple of things that I would say is that make sure whenever you have it [ice tea] you have to be physically active after you do it, so that you’re burning it off Client: Okay Main Midwife: So, have a drink of iced tea and then do some housework, go for a walk do something physical so that you’re not just having a big glass and going to bed. Your body will really make no use of it. Um, think about the caffeine, so I would say, I’m just going to guess that it’s probably similar to tea, and I wouldn’t suggest having more than two a day Client: Okay Main Midwife: and then just think about ‘I want to have a normal birth, I don’t want to have high blood pressure and the complications associated with it, and I’m just going to limit myself to two a day’ and you know, and just try and make sure you’re watching your other unnecessary sugar intake. Strategically, the midwife shifts from attempting to completely eliminate the client’s ‘bad’ habit to outlining specific self-care practices that

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she can use to control and minimise its negative effects. These ‘technologies of selfhood’ (Lupton, 1999a, p. 90) include both physical action (taking a walk, doing housework) and cognitive-psychological action (monitoring intake, reflecting on risk, engaging in self-persuasion). Such an approach suggests the kind of ‘self-management’ perspective that Veinot (Chapter 3) describes as central to contemporary healthpromotion empowerment discourses, which assume that people will actively and rationally plan their conduct, manage their symptoms and so on. The client utters minimal response tokens in reply, but she also contributes to this part of the conversation in ways that are less comfortably aligned with the midwife’s rhetoric. For example, rather than agreeing that she will do her best to manage what the midwives half-jokingly refer to as her ‘vices’, she insists that drinking ice tea is ‘the only one [vice] I have . . . . The rest of the stuff, like it’s not a really major thing’. She thus accepts the characterisation of her ice tea craving as a ‘vice’ but uses this categorisation as the means to assert that the rest of her nutritional habits are blame-free. By redefining the situation not as a need to regulate multiple ‘vices’, but instead as one possibly ‘major thing’, the client implicitly argues for the relative unimportance of ‘just that ice tea’. Although she doesn’t say much during this episode, she is an active rhetorical agent and not simply a passive receiver of expert information and advice. By articulating her own knowledge and reasoning, she partially—if indirectly—resists the midwives’ professional explanations and recommendations. Informed choice conversation about circumcision The other ‘informed choice’ episode from this health care visit is similar in that the midwives and client participate in a lengthy and multifaceted discussion of the topic. Even more than their conversation about ice tea, this discussion involves diverse forms of reasoning and evidence that include but range beyond the strictly medico-scientific, as the midwives seek to persuade the client that circumcision may not be a wise choice. This rhetorical tension between the midwives’ and client’s motivations appears from the outset. In response to the student-midwife’s suggestion that they discuss the topic, the client immediately (re)asserts her and her husband’s already-taken decision: ‘Yeah, we want him circumcised’. This statement suggests that she may see no need for further discussion since their decision has been made, but her subsequent statement that ‘He’s the one that wants it’ indicates that, in fact, she may not

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entirely agree. The midwives use this distinction between husband and wife as an opportunity for exploring multiple reasons why circumcision may not be a wise choice. The client responds with her own rhetorically situated and complex process of self-justification, a process that allows her to maintain the decision to have the baby circumcised without directly disagreeing with the midwives. The midwives once again dominate the conversation in that they speak more than the client and they lead the sequence of arguments, but she nonetheless plays an active and significant role. The first argument is about pain. In response to the woman’s request for more information about the procedure, the midwives not only provide a technical explanation, but they also emphasise that the process causes discomfort: Client: So, could you explain to me exactly what they do? Student Midwife: What they do in [our city] is they use what’s called the Plastibell circumcision Client: Alright Student Midwife: And they put, um, they put a ring around the glans of the head of the penis Client: Okay Student Midwife: and they cut the remaining foreskin round it, um, the thing about the procedure is that um, they don’t have good anaesthetic with it, they just put [indistinguishable] cream which is a local anaesthetic cream Client: Yeah Student Midwife: Um, so babies do feel it. The midwives’ information implies that if the client decides to have her baby circumcised, she will be causing him (unnecessary) pain. Rather than replying directly to this argument, the client—perhaps strategically—utters minimal response tokens that support the continuation of the midwives’ explanation without clearly indicating her own views. The second main argument is economic. The midwives explain that because circumcision is considered a ‘cosmetic’ procedure (as defined by the external authoritative body of the Canadian Pediatrics Association), parents must pay for it. This argument appears more meaningful to the client, who expresses surprise, even mild shock (‘Are you serious?’ she says) and then comments that her husband may not realise how much the procedure will cost. The midwives’ information thus offers

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Client: ‘cause like I said, he, my husband’s the one that wants him circumcised, but I don’t think he realised there was a fee to it Main Midwife: Yeah Client: I’ll let, I’ll discuss it with him and if he’s still adamant about having him circumcised, then we’ll Main Midwife: Sure Client: then we’ll pay. Through this response, the woman enacts a complex, ambiguous process of identification and dissociation (Burke, 1969) with the midwives and also with her husband: on one hand, she aligns herself with the midwives in taking up their information as a suasory resource that she can use and she dissociates herself from her husband by re-stating that he’s ‘the one that wants him circumcised’. On the other hand, she re-identifies with her husband by reconfirming that if he still wants to go ahead with circumcision, ‘then we’ll pay’. The midwives appear to recognise that the key to persuading this couple not to have their baby circumcised lies in providing the client with the argumentative resources to convince her husband—it’s he, not she, who needs to be persuaded. They shift tactics at this point by asking the client to explain her husband’s—rather than her own—reasons for wanting the baby to be circumcised, and then articulate a series of counter-arguments that the client could draw on. As in the first part of this episode, the midwives’ arguments combine medical–physiological information with other evidence and reasoning. For example, they counter the husband’s concern (as explained by the client) about ‘cleanliness’ by clarifying the procedural issue that proper cleaning of an uncircumcised penis is no more difficult than of a circumcised one, and they draw on their expert health population knowledge to reassure the client that the risk or ‘incidence of infection is very, very low’. However, in addition to communicating this apparently straightforward, standard professional health information, the midwives also explore the possible social–psychological dimensions of the husband’s reasons for wanting his son circumcised. In response to the client’s explanation that ‘he doesn’t want the questions and the pointing because my husband is circumcised’, the midwives argue that the assumption the son will question the physical differences between him and his father is unwarranted because ‘kids just naturally accept,

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a rhetorical resource for the woman to use in trying to dissuade her husband:

you know, well we’re just different’, and, or ‘this is the way it was when daddy was a baby, and this is how it is with you’. They also propose that, in the long term, a boy is more likely to be concerned (at a social identity level) about resembling his male peers than resembling his father: ‘you know when you’re 16 or 15 you probably want to look more like the boys in the locker room than like your dad’. Finally, working from the commonplace that most people want to behave like other people, the midwives conclude their series of counter-arguments by explaining that the current social trend is not to circumcise: The other thing, just for him to know is that currently in our community the circumcision rate is running anywhere, and depending on the month, between 10 and 20 percent. So most little boys nowadays are not circumcised, and I think sometimes that, um, influences people quite a bit too because they wanna, you know, they sort of want to go with the trend . . . The client (for the most part) neither agrees nor disagrees. Instead, while tacitly accepting her obligation to present these arguments to her husband, she twice re-clarifies that he, rather than she, is the one who is making this decision: Client: So, like I said, I’ll discuss it with him because he’s the one Main Midwife: yeah Client: that wants him circumcised Main Midwife: For sure. Client: I don’t really care [...] Client: ‘cause like I said, he was the one, like I let him have the decision Main Midwife: Sure, sure Client: on what he wants to do regarding that issue Main Midwife: Yeah Client: because for me, if you’re circumcised or not, I could seriously care less. Rhetorically relegating the responsibility for the decision onto her husband enables the client to justify a health care ‘choice’ that the midwives clearly consider unwise without having to directly counter the substance of their arguments. However, she also avoids directly disagreeing with her husband by framing her own position as essentially neutral.

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The range of arguments and counter-arguments and the kinds of information and knowledge drawn on as part of this reasoning process underscore the holistic approach of midwifery care, which takes the situation of the particular woman as its focus (the intricate web of her relationship with her husband) and addresses the social and affective— not just physical and medical—dimensions of pregnancy and childbirth. This approach also creates a situational exigency for midwifery clients to actively engage in the kind of substantial, multi-faceted rhetorical work enacted during the health care visit analysed here. For the client, the rhetorical work is two-fold: first, the situation requires her to respond to the midwives’ arguments against circumcision in a way that shows her respect for their professional expertise but justifies why her personal situation may not enable her to make the ‘informed choice’ they recommend; second, it asks her to use the ‘information’ she has received as a suasory resource in the projected rhetorical context of her discussions with her husband. The opportunity to acquire these rhetorical resources could be interpreted as empowering for the client, positioning her not simply as the passive recipient of information for compliance but as a potentially active rhetorical agent in an ongoing negotiation of the issue. It also, however, can be interpreted as creating an obligation to take responsibility not simply for making an appropriate health care decision herself, but also for persuading (or failing to persuade) her husband to make an appropriate health care decision.

Conclusion This study of two conversational episodes during one midwifery health care visit offers only a small taste of the many complex ways in which midwives and clients share knowledges and negotiate health care decisions through the professionally mandated informed choice process. From a rhetorical perspective, however, developing a fuller understanding of how informed choice functions as a significant mode of health care work in the context of midwifery care necessarily requires attention to the improvised specificities of local conversations, each with its unique communicative intricacies, multiple functions and indeterminate outcomes (Salmon, Chapter 9). This kind of analysis illuminates the rich and subtle ways in which midwives and clients navigate, through their micro-level suasory practices, the broader problematic of informed choice that uneasily shapes, at a macro-level, Ontario midwifery care (and that is re-shaped by each local informed choice conversation).

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Such an analysis demonstrates the substantial immaterial labour that midwifery’s professional–ideological commitment to informed choice engenders both for midwives and their clients. In characterising this work as rhetorical labour, I wish to foreground the significance and complexity of what the rhetorical actors accomplish. Their situated negotiation of informed choice topics constitutes a challenging and important mode of health care engagement. For the midwives in the episodes explored here, a key challenge of this rhetorical work appears to involve finding the available means of persuasion to convince their client to make ‘good choices’ while avoiding being overly prescriptive or judgemental; it requires them to navigate the normative tension between acting as non-authoritarian, cooperative facilitators of the client’s autonomous decision-making and acting as authoritative experts who know and prescribe what’s best for the client. For the client in this encounter, midwifery’s informed choice mandate creates a rhetorical exigency for her to actively engage with normative expectations about her self-care/health care practices and decisions. The rhetorically strategic ways in which the client negotiates—and partially resists— these expectations indicates how she draws on her own lay knowledges and arguments to reconfigure the midwives’ expert advice in terms that make sense to her. Contrary to a linear, transmission model of communication, the suasory practices that client and midwives engage in during these conversational episodes support the view that, in the context of Ontario midwifery care, informed choice constitutes a substantive, challenging and dynamic form of rhetorical work.

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Empowerment, Compliance and the Ethical Subject in Dietetic Work Jacqui Gingras and Lucy Aphramor

In this chapter, we examine how dietitians use empowerment discourses as a means for ensuring compliance among those seeking and receiving their nutritional expertise. The question posed by the West Midlands branch of the British Dietetic Association (2005) ‘Can we empower our patients to increase their compliance to treatment?’ suggests that dietitians are co-opting empowerment discourses to generate compliance. They may also reinforce the commodification of nutrition knowledge through an emphasis on self-care that amplifies the impact of lifestyle behaviours in determining health. Wherever food work and expertise is primarily located, with attendant consequences for empowerment, this construction belies the fact that ultimately people’s health is not determined by access to health information or services. In an era of personal responsibility when ‘good citizens’ are encouraged to seek and act on health information to facilitate an efficient health care system, nutritional treatment is presented as necessary and unproblematic. The empowerment–compliance complex is implicitly positioned as a cost-saving mechanism within this health care matrix and as a way to reinscribe the moral character of the good citizen. In such a way, nutritional health becomes a property of individuals rather than something contextualised by the relationships individuals enjoy with family, community, organisations, society and the environment. By examining how dietitians have taken up empowerment discourses, we reveal how aspects of the profession of dietetics can become disempowering for both dietitians and their clients. As a response to the more problematic issues identified, we propose a dietetic practice that acknowledges people’s lived experiences in a dynamic social and political milieu, and we examine how people, in their role as professionals 82

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or dieters, may resist control and compliance discourses as a means of subverting and disrupting neo-liberal agendas that would position them otherwise. In the next section, we provide a short history of the dietetic profession before outlining the history of empowerment discourses within dietetics, which originated in the care for those with diabetes. We then examine the ‘empowerment work’ done by clients as well as by dietitians themselves. The ethics of empowerment for both groups are discussed before we conclude with our plea for a dietetic practice that takes seriously the bodily experiences of both clients and dietitians.

Situating the dietetic profession Dietitians are trained not only to treat but also to prevent nutrition-related disorders using evidence-based nutritional interventions. Dietetics, a century-old profession, is one of the most highly gendered health professions in that most practitioners are women (98 per cent in 2007–2008) (College of Dietitians of Ontario, n.d.a). Food scientists, usually men, are typically responsible for generating theoretical knowledge about food and nutrition, while women work as dietitians in clinical, community and administrative settings to transfer the knowledge to those who want or need it, also often women (Liquori, 2001). Through this gendered division of labour, nutrition science comes to be highly valued, while the translational effort that is dietetic work (translating science into making choices about food) is seen as marginal and the bodily experiences of dietitians and their clients become invisible. Liquori (2001) calls for a critical appraisal of the dietetic profession in order to address the long-standing division between nutrition as a masculinised science and food/eating as feminised work. Dietetic health promotion imperatives remain mainly the purview of women, as dietitians or as those responsible for their own and their families’ food intake. The nutrition discourses involved are intimately bound up with the intense contemporary Western preoccupation with body weight management, itself a highly gendered terrain and, as such, one that holds enormous power for shaping dietitians’ subjectivity.1 The multiple and complex ways in which gender, the body and professionalism work together to maintain dietetics in a subordinate position in the medical hierarchy, and the impact this has on how dietitians negotiate discourses to ensure compliance, form the basis of our chapter. The work of dietetics includes scientising food through the application of quantifiable nutrition evidence as well as constituting a nutrition

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discourse to encourage the ‘right’ way of eating. Dietitians strive to use ‘empowering’ strategies to enhance clients’ compliance with changes (ostensibly) supported by evidence-based nutrition research and thus raise the dietitians’ significance as translators of nutritional science knowledge. If dietitians are able to do their work well, more and more people will make healthy eating a priority, thus reducing health care costs. The empowerment–compliance approach has the effect of shifting the responsibility for the outcomes of health behaviours to the individual. It positions a range of disease states as preventable through good food choices and actively works to depoliticise nutrition and health inequalities. This framing can generate feelings of shame, hopelessness and self-blame among clients who are unable to follow through on the expert advice, or who experience poor health despite making the recommended food choices. Shame then informs their relationship with food such that, rather than facilitating empowerment, vast numbers of people are ambivalent about their eating habits despite, or because of, intense public health campaigns to encourage increased intakes of fruits and vegetables, reduced intake of fats, and achieve ‘healthy weights’. Situated within prevailing neo-liberal contexts, the work of nutrition experts has shifted its emphasis from the subjective experience of eating to the objective status of being fed. Among other dilemmas for the profession, this shift results in a privileging of scientised nutrition discourse and the loss of potential for affecting the market-driven ideologies that currently dominate nutrition discourse. In this situation, empowerment has been redefined, and has been stripped of its original potential for transforming women’s experiences of eating and food. This reduced potential has implications for the professional and her conceptions of her professional responsibilities as well as for the (mostly) women she offers support and services. Building on the feminist post-structuralist work of Bronwyn Davies, we consider how interventions that reinforce the empowerment– compliance complex constitute the dietitian as subjectively unethical and consider what remains to be said about the utility of a profession that supports such actions given their own code of ethics.

Empowerment–compliance discourse in dietetic work The presence of empowerment discourse in nutritional health promotion and treatment practice has not had a long history (Traynor, 2003). Typically, a rhetoric of empowerment was adopted to replace

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that of compliance which had come to have negative associations as heavy-handed paternalism. Empowerment was redolent with notions of options, education and power-sharing, a process that would enable informed patients to self-manage their condition and exonerate professionals from some of their previous responsibilities for outcomes as evident in Asimakopoulou’s (2007) statement: ‘if we propose that diabetes self-care is placed wholly into patients’ hands, we must ensure that they truly are empowered before we abdicate responsibility for their care’ (p. 97). Here, the individualised concept and practice of health care that neglected the social and material conditions in which health was constituted remained untouched. So too, the imperative for the patient to choose appropriately (morally) and responsibly, continues to constitute, regulate and maintain a neo-liberal division where health care work and accountability for outcomes sit squarely on the shoulders of the patient (Veinot, Chapter 3). Empowerment is understood in contemporary dietetics as being about ‘helping people change’ (Aphramor and Gingras, 2010), wherein it is the role of the dietitian to develop the skills necessary to be able ‘to empower her patients’ own resources for change’ (Gable, 2007, p. 4). This characterisation of empowerment as something that can be bestowed from one person to another informs the following statement, ‘[i]t is thus argued that before we assume that patients are empowered, we need concrete evidence that our communication skills have been truly empowering’ (Asimakopoulou, 2007, p. 95). Empowerment for dietitians’ clients involves key themes for patients of individual choice, personal responsibility, health knowledge, self-care skills and the ability to participate in decision-making within a medical setting. In the wider literature empowerment is given far greater scope with empowering interventions typically seen as ‘participatory strategies that are based on group dialogue, collective action, advocacy and leadership training, organisational development, and transfer of power to participants’ (Wallerstein, 2006, p. 9). Airhihenbuwa warns us ‘that empowerment of and participation by the people a programme is intended to benefit must take into account the degree to which individual decisions are mediated by power, politics, class, and cultural understanding of the meaning of participation and empowerment’ (cited in Ochoa Camacho et al., 2008, p. 228). While there are undoubtedly dietitians working to achieve the political transformations in and beyond practice needed to achieve social justice (Aphramor et al., 2009), these political dimensions of practice, including in relation to

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empowerment, are notably lacking from mainstream dietetic theory and texts so that empowerment is understood transitively (see Bella, Chapter 2). The field of diabetes care accounts for much of the dietetic research on empowerment. Funnell and colleagues (1991) emphasise the frustration of diabetes educators (many of whom are dietitians) to motivate patients to comply with nutrition recommendations and explore ‘the art of empowerment’ as a response. Within diabetes care, the impact of time, money and life opportunity on health choices/outcomes is typically mentioned, and the socio-economic profiling of the incidence of diabetes acknowledged. But the significance of these factors is rarely discussed further such that the rich literature on how socially embedded processes affect health gets neglected and it is invariably an individual’s health behaviours that are, yet again, disappointingly, and misleadingly, presented as the primary route to health. Freund and McGuire (1995), for example, remind us of the need to ask questions about the effects of power, stress and autonomy when enquiring about health. Nutrition professionals could, if working reflexively, acknowledge and challenge the far-reaching effects of social positioning on health and nutrition inequalities in order to develop empowering approaches in dietetic practice. More often the empowerment discourse is conflated with realities that appear to disavow this liberatory agenda. In this chapter, we take a critical view of empowerment as an instrumental and depoliticised means for nutritional experts to secure compliance among their patients, clients, or consumers (Adolfsson et al., 2008; Dibben and Lean, 2003; Funnell et al., 1991; Kent, 1988; Nielsen et al., 2008; Olsson et al., 2008; Powers, 2003). Clearly, this conflation of empowerment with compliance is problematic and undermines the work and the ethics of the dietetics professional. Salmon (Chapter 9) explores some of the ethical ramifications of an empowerment agenda in which the patient, as consumer, is fitted with knowledge. We extend his critique to the dietetics profession by suggesting other ethical tensions inherent in this knowledge exchange when information is biased, partial, or inaccurate. Of course, knowledge is always bounded (Choo, 1998); what we are concerned to explore is the ways in which what counts as a valid nutritional health concern and outcome is institutionally proscribed through silence and reiteration. We seek to redress the dilemma of ‘instrumental empowerment’ in the context of post-structural notions of embodiment.

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For all their advantages, participatory and collaborative approaches to nutrition health promotion are labour and resource intensive. One response has been for dietitians to recruit lay people to complement and reduce the work of professionals and to help reduce costs. For instance, Kennedy and colleagues (1999) invited Community Nutrition Assistants (CNAs) to assist with nutrition education among low-income groups. It was recognised that CNAs made a unique contribution since ‘people indigenous to the community make more successful nutrition assistants than professionals’ (Kennedy et al., 1999, p. 503). One of the findings from this project was that the CNAs were successful at connecting with a wider range of people than the community dietitian could do on her own. ‘[T]hey are much more approachable—people contact them who would never dream of approaching a dietitian’ (Kennedy et al., 1999, p. 508). The CNA was charged with the (timeconsuming) work of shopping for food, researching recipes, collecting equipment, arranging venues and teaching basic cooking skills, all of which were demonstrated to influence eating behaviours among those who attended. Engaging lay people in the production of nutrition education could appear to be a contradiction when dietitians present themselves as necessary experts and the most trusted source of nutrition information (Dietitians of Canada, 1997). However, as discussed earlier, where the work of feeding the family (DeVault, 1991) is considered deskilled work, outside the purview of the nutrition professional, this separation between dietitians’ and CNAs’ roles could be seen as reinforcing the scientised realm of nutrition as one occupied by the professional with the everyday realm of food preparation given over to the lay person. In an alternative reading, when empowerment is understood as comprising elements of participation, trust, education, support and confirmation of people’s abilities (Ekpe, 2001), then creating opportunities for unskilled residents to influence community health assumes a more transformational aspect as it builds community capacity for change. But how far is the work of the CNA that of community empowerment and how far is it really the work of encouraging others to comply with dietitian-identified, positivist notions of healthy eating—work shored up by neo-liberal standards that, as we will show, have implications for the dietitian’s body as well as the bodies of her clients. In the following sections, we further explore the relations between neoliberalism and empowerment through an analysis of how nutrition

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Body weight work Body weight, a highly visible personal characteristic, is a primary target for dietetic intervention. Dietitians and other allied health professionals normatively take body weight as a reliable marker of health and one that is readily malleable, a framing that gives rise to a discourse of control that holds out weight loss as a reasonable goal. However, the scientific credibility of therapeutic weight reduction is increasingly undermined by an interdisciplinary critical weight literature (Gard and Wright, 2004). Two key issues highlighted by critical weight studies have immediate relevance to dietetics. First, the fact that it is notoriously difficult to achieve long-term weight loss: over 90 per cent of diets fail even when reduced calorie intake is maintained, and typically people regain weight at levels higher than when weight-loss programmes started (Ikeda, 1995; Jain, 2005; Mann et al., 2007; Saquib et al., 2008). Second, critical weight studies scholars point out that anti-obesity and weight management discourses contribute to the belief by the public and most professionals that there is a dangerous obesity epidemic that demands immediate action. These discourses provide an ideal opportunity for dietitians to be positioned as the ‘experts’ who are needed to tackle the problem through delivering weight management services. This professional subjectivity is challenged when clients are unable to lose weight or lose weight only to regain it, so despite being a weight management expert, the dietitian is unable to make her clients comply in the longer term. In the dietetic literature, the fact that diets don’t work is (mis)read as a failure of compliance on the part of the client. Professional discourse on weight management urges dietitians to redouble their efforts in weight management by adopting an empowering approach centred on patient choice, patient responsibility, skills development and a collaborative therapeutic relationship. But the sense of failure lies with the client, not the dietitian or the diet (Grace et al., 2008). This failure is experienced by the dieter who is left feeling guilty, shameful, doubting, unhealthy and demoralised, a far cry from empowerment. An alternative response would be for the dietitian to engage with obesity science and, thus educated, turn her attention to the social and political realities

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professionals perform body weight work. This relationship demonstrates how empowerment is confused with compliance and manipulation in an effort to make (mostly) women’s bodies conform with idealised standards of thinness in a context that derives much economic benefit from promoting weight loss as an avenue to improved health.

that contribute to obesity ideology, poor health and idealised notions of the healthy body. Very few have chosen the latter course so that the dominant practice of dietitians is in line with neo-liberal policies that occlude social realities (Guthman and DuPois, 2006) and simultaneously reinforce sizeist models of health. The primary cause of increased metabolic risk, an ostensible target of anti-obesity policy, is not people’s ‘freely chosen’ eating and exercise habits but is rooted in political systems that disadvantage (Aphramor and Gingras, 2010). It is not that the many proponents of obesity discourse are unaware of the relationships between inequalities, fatness and health and the ineffectiveness of treatment, it is more that they choose not to integrate these realities into health practice. As idealised standards of thinness reign, what are the implications for dietitians’ own bodies? As an editorial in a dietetics journal states, ‘one of the most worrying results was that less than half the dietitians felt they should be role models, and should maintain their own body mass index (BMI) between 20 and 25’ (Stephen, 2004, p. 501). This editorial comment chastises those dietitians who themselves have a body size outside a delimited range. The dietitian’s own body comes under the direct and uncompromising gaze of the dietitian’s own professional organisations and field of knowledge. The discourse a dietitian inflicts on herself and her patients/clients can be understood as a control discourse; the language of ‘limit’, ‘reduce’, ‘moderate’, ‘manage’ and ‘measure’ that leads to restrained eating practices (Gingras and Brady, 2010).

The ethics of empowerment Feminist principles of empowerment as a dynamic interplay between conscientisation and social change (Summerson Carr, 2003) have been co-opted by a market-driven model of health care. Within this model body weight management discourse has instigated a move for women as ‘subjects of care to . . . objects of treatment and revenue production’ (Thomas and Zimmerman, 2007, p. 362), which has ruptured any original feminist intent of empowerment. Far from raising awareness of the inclusive, and potentially empowering/politicising, maxim that healthy bodies come in all shapes and sizes, women are positioned as consumers of weight-loss products and plastic surgery. These choices are extolled as feminist, despite their ethnocentric, heteronormative rationalisation and even though such products are not equally available to all women. A careful analysis demonstrates ‘just how dramatically the feminist

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model has been co-opted’ (Thomas and Zimmerman, 2007, p. 379) for the purposes of capitalist gain. What is neglected by non-feminist approaches to dietetic practice is that health can be achieved without concomitant weight-loss and consumerist imperatives. The anti-diet (health-at-every-size) approaches are well-supported by a burgeoning literature, yet remain neglected in the dietitian’s professional lexicon. Among other requirements, a dietitian’s code of ethics states that s/he must ‘maintain a high standard of personal competence . . . and ongoing critical evaluation of professional experience’, as well as ‘ensure that [her] publics are informed of the nature of any nutritional treatment or advice and its possible effects’ (College of Dietitians, n.d.b). By not acknowledging that a critical weight literature (Gard and Wright, 2004) has problematised traditional approaches to promoting health through weight loss, dietitians have contravened their own code of ethics; dietetic competence is called into question as is the public’s ability to provide informed consent in relation to weight loss practices. What remains in question is how long empirical evidence compiled by Bacon and colleagues (2008, 2005, 2002) along with others (Aphramor, 2005; Campos, 2004; Gaesser, 2002; Gard and Wright, 2004; Monaghan, 2005; Provencher et al., 2007) suggesting that a health-centred (nondiet) approach leads to improvements in health outcomes compared with a weight-loss approach will be disregarded by the dietetic profession. As long as this growing body of literature is overlooked, claims of competent and ethical practice are in jeopardy and the dietitian as an ethical subject is challenged. Other barriers exist to engaging in empowerment for social change. Perceptions of what people want can undermine efforts by social activists to engage people in decisions about their own eating behaviours. There is a perception that ‘older adults and those from lower socio-economic and education levels prefer a paternalistic, doctor-led consultation to one that encourages mutual participation’ (Morgan cited in Asimakopoulou, 2007, p. 96). Since dietitians are barely visible in the medical-model hierarchy, their efforts to engage in meaningful and empowering dialogue with clients may be undermined by perceptions that a paternalistic approach is preferred among the dietitians’ medical colleagues. A recent review of patient–health care professional communication further confirmed this, concluding that ‘it can be harmful to provide detailed information to those who do not want it and to impose choice on those who want their doctors to decide’ (Kielser and Auerbach cited in Asimakopoulou, 2007, p. 96). These perceptions work actively to occlude the social realities of how body weight is determined, especially

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Conclusion: embodiment as a response to the empowerment–compliance binary Since the activities of feeding and caring for the self are embodied activities, that is, these activities necessitate the presence and response of bodies, we claim that embodiment discourse offers a response to the duality established by the empowerment–compliance machine as we have defined it above. As Haraway implores, ‘[w]e need the power of modern critical theories of how meanings and bodies get made, not in order to deny meanings and bodies, but in order to live in meanings and bodies that have a chance for the future’ (2004, p. 85). Embodiment has been described as a means for subverting the ‘disciplinary, institutional mechanisms of control’ and ‘a possible locus of revolt or ethical responsibility’ (Ziarek, 2001 cited in Davies and Gannon, 2006, p. 61). We agree with this position and offer several possibilities for how embodiment might address the empowerment–compliance binary in dietetic work. In particular, we draw attention to how the embodied experiential knowledge of both dietitians and their clients comes into conflict with the theoretical knowledge of food science. Neo-liberalism is co-terminous with professionalism in that the ends of both are increased efficiency, accountability and autonomy. In dietetics, professionalism has been described as a conservative project: dietitians are trained into established paradigms, they gain competencies associated with the field and become practitioners of a science with its own canons and traditions (DeVault, 1999). The project of professionalisation begins during the dietetic students’ academic education and practical training. Professionalisation in dietetics is structured to privilege science-based epistemologies, is constituted by professional nutrition discourse and fails to acknowledge the emotionality and politics of dietetic practice (Gingras, 2009). Liquori (2001) describes the science-based knowledge dietitians come to possess as undergraduate students and the experiential knowledge involved in practice as being in competition with one another, which has implications for ‘how members of the profession learn their place in it and their value as women and men, practitioners and scientists’ (Liquori, 2001, p. 234). Travers

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among those from lower socio-economic and education levels. With these oppressive standards, very little is likely to change regarding public exposure to health-centred approaches (compared with weight-centred perspectives). And the docile dietitian will continue to work to insure her own body weight falls obediently into line along with her clients’.

Empowerment and Compliance in Dietetic Work

(1995) contends that professional nutrition discourse, the specialised language dietetic students learn during the course of their training, serves to construct epistomological inequities which contribute to public health problems. DeVault (1999) describes the professional training that dietetic students receive as a structure that produces isolation from families and communities so that students learn to suppress emotions. These educational structures are initial sites to disrupt disembodiment. A call for embodied approaches to dietetic education has been made previously (Aphramor and Gingras, 2009; Atkins and Gingras, 2009; Gingras, 2008, 2009; Gingras and Tiro, 2008) where vulnerability and authenticity of the educator is the primary orientation to embodiment. Outside of educational contexts, embodiment is envisioned as an act where dietitians’ bodies are considered sites of resistance that oppose the trivialisation of the mundane acts associated with eating and taking up space. Much writing and speaking of the dietitian’s body has yet to occur, but could do so in the context of scholarly inquiry (autoethnographic, feminist research), arts-informed activities (poetry, performance arts, visual arts, creative writing) and ‘supervision groups’ (facilitated group conversation in a similar vein as psychology’s clinical supervision to enable dietitians to make visible the tensions and dilemmas brought on through practice). Neo-liberalism is constituted by discourse where ‘primacy is given to the flexible individual who acts responsibly in relation to, and who is valued in terms of, the market’ (Davies and Gannon, 2006, p. 65). A facet of the health care market is body weight management, which is premised on weight as a determinant of health. Resistance to neoliberalism occurs when dietitians refuse to categorise foods as good or bad, but instead politicise the work necessitated by and through food—work that is primarily accomplished by women (DeVault, 1991). Another method of resistance is evidenced by adopting a health-centred approach to dietetic practice where health is achieved through means other than body weight management such as by eating an array of high quality whole foods according to internal cues of hunger and fullness. This approach has the power to disrupt the body weight management spectacle (Guthman, 2009), but leaves dietitians somewhat uneasy since much of dietitian subjectivity is constituted through their involvement in promoting weight management practices. As dietitians consider embodiment, they might begin to unmask the fleshiness of bodies within their social context. This consideration of fleshiness would stand in relation to bodies that are abstract, apolitical and largely masculine. Trust, vulnerability and messiness

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would flavour dietitians’ experience and theorising of the body, which constitutes a redefinition of subjectivity. What we have been calling for (longing for) in this chapter is a feminist understanding of experience and embodiment within the context of dietetic education and practice; a feminism that does not avert from the leaky, unpredictable, emotional body, but recognises and embraces the potential this body possesses/implies/demands. While for some in the profession this call brings about a queasy response and a vehement rebuttal, we contend that the disturbing implications of the status quo are enough to render us non-compliant and willing to open up ‘creative lines of flight’ (Davies and Gannon, 2006, p. 64); lines of flight for which our bodies hunger.

Note 1. We use subjectivity instead of identity since identity is not a stable construct, but ‘constituted through those discourses in which people are being positioned at any one point in time, both through their own and others’ acts of speaking/writing. Subjectivity is necessarily contradictory . . . and outside of or larger than those aspects of being that come under rational or conscious control’ (Davies, 2000, p. 57).

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Disorder Construction as Lay Work: Examining the Relationship Between Sleep Paralysis Construction and Help-Seeking Behaviours Corinne Weisgerber

The internet, and especially, participatory communication technologies, such as forums, social networks and wikis, are often credited with turning ordinary people into armies of content creators and changing the way information is produced and consumed (Gillin, 2009; Grossman, 2006; McConnell and Huba, 2007). In the realm of electronic health information and consumer health informatics, these technologies are thought to be paving the road for ‘participatory medicine’, or an increased collaboration between patients and doctors as a way to improve health outcomes (Fox, 2009a). According to Fox, this type of citizen participation in health care is just as important as participation in the political process and should therefore be encouraged: Technology can enable the human connection, creating opportunities for people to gather and share information, to solve problems together. The passion that we saw in the political campaigns last year [2008 US Presidential election] is matched by the passion we see when someone is trying to save a life, find a better treatment, or just manage the health of a loved one. (Fox, 2009a, para. 6) The common thread running through this type of discourse is the idea that increased participation in one’s health care is not only desirable, but also constitutes a form of empowerment (see Veinot, Chapter 3). New information and communication technologies are hailed as having 94

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given patients a way to stay informed and to participate in everyday health management decisions. Although better access to medical knowledge and increased participation in health decisions are no doubt positive developments, they do however carry a certain burden, namely a shift in certain responsibilities away from the health care system and on to the individual. In this chapter, I will analyse an example of such a shift, specifically, how lay people experiencing a particular sleep disorder connect with one another online to perform the ‘meaning work’ (see Spoel, Chapter 5) traditionally performed by doctors when they render a medical diagnosis. In particular, I will examine how lay constructions of the disorder influence the likelihood of seeking medical care. This question is particularly important in light of Veinot’s discussion (Chapter 3) of e-health initiatives that may dissuade people from seeking medical care altogether in order to avoid ‘putting a collective resource in peril’. She suggests, for instance, that the online health information directed at patients is characterised, at least in part, by a discourse of economic rationality that advises against seeking ‘excessive’ or ‘unnecessary’ medical care. Traditionally, the role of interpreting symptoms and naming diseases has been assumed by medical professionals (Tobin, 2000) who possess the cultural authority to label disease and dispense advice (Starr, 1982). However, new communication technologies, and the rapid proliferation and public adoption of e-health tools, especially websites, seem to have transferred some of that interpretive work onto the individual. These technological developments may be accompanied by a radical shift in the way medical knowledge is produced (Nettleton, 2004). According to Nettleton, ‘medical knowledge has escaped metaphorically and literally; it can be accessed and indeed is now increasingly produced by health consumers and users’ (p. 673). Nettleton uses the term ‘e-scaped medicine’ to refer to the idea that much medical information now resides outside medical institutions, on the network of computers that make up the internet, allowing patients to both consume and create medical knowledge. As a result, the medical profession no longer holds exclusive control over this type of knowledge. In order to account for this paradigm shift, Nettleton extended Jewson’s (1976) work on medical cosmologies by adding an ‘e-scaped’ category. The Pew Internet and American Life Project provides data to support this idea. For example, Fox (2009b) reports that ‘59% of e-patients have consulted blog comments, hospital reviews, doctor reviews, and podcasts about health and health care’ and ‘20% of them have posted

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comments, reviews, photos, audio, video or tags related to health care’ (para. 4).

The disorder that is the focus of this chapter is sleep paralysis (SP), a relatively understudied (Fukuda et al., 1987) and poorly understood (Buzzi and Cirignotta, 2000) parasomnia associated with rapid eye movement (REM) sleep. During a sleep paralysis attack, which can occur either at sleep onset or upon awakening, a person’s brain essentially emerges from sleep but fails to send a signal to the body to do the same. As a result, people experiencing sleep paralysis awake to find their bodies completely paralysed. This feeling of paralysis has been reported to last anywhere from a few seconds to a few minutes and is often accompanied by hallucinations (Ohaeri, 1997) that range from sensing an evil presence or intruder figure, feeling that one is suffocating or choking, to having an out-of-body experience (Cheyne et al., 1999a). Sleep paralysis is often mistaken for a bad dream although, unlike a nightmare, it is a waking experience (Hufford, 1976, 1982) during which the ‘victim feels wide awake yet completely paralyzed’ (Liddon, 1967, p. 89) and is able to perceive his/her environment in a realistic manner (Hufford, 1982). The hallucinations accompanying this disorder result in an experience that is often described as terrifying to the point of fearing for one’s life (Cheyne et al., 1999a; Hufford, 1982; Ohayon et al., 1999). In some cases, the feeling of terror is so extreme that individuals who experience it attempt suicide as a way to avoid future attacks (Hosty and Abbott, 2000). Because of these rather unusual symptoms, many people who have experienced SP feel too embarrassed to admit their experiences publicly (Cheyne et al., 1999b; Ohaeri, 1997; Paradis et al., 1997). Factors that may contribute to an individual’s reluctance to talk about SP experiences and to seek medical help, include fear of negative reactions to the disclosure (Cheyne et al., 1999b; Everett, 1963; Hufford, 1982; Kristof, 1999), fear of a possibly serious diagnosis (Mavromates, 1991; Ohayon et al., 1999) and a belief that SP experiences are unique and not shared by other people (Cheyne et al., 1999b). There are numerous examples in the SP literature that demonstrate the difficulties individuals face when trying to explain their experiences to people who have never had an SP attack. Many people afflicted by the condition are afraid that others might think of them as strange or crazy

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if they were to tell them about the hallucinations experienced during an attack (Cheyne et al., 1999b). As a respondent in Hufford’s (1982) study put it, ‘I have never known anyone who has experienced it and when I try to explain it to my family and friends, they look at me in disbelief’ (p. 48). Everett’s (1963) study of SP among medical students provides yet another important case in point. One of the respondents in his study contemplated denying his history of sleep paralysis for fear of possible negative repercussions relating to his medical career. According to Cheyne and colleagues (1999a), this fear of unsupportive or negative reactions following a disclosure is a legitimate concern. Their research suggests that many people, who were afraid of being thought of as crazy but revealed their experiences nonetheless, did indeed evoke the type of negative reaction they had dreaded. Fear of being ridiculed because of hallucinations is not the only deterrent to disclosure. Individuals who experience SP may be afraid to find out what is happening to them and may, therefore, avoid seeking a diagnosis. In a study of 8085 Germans and Italians, Ohayon and colleagues (1999) reported that ‘many subjects who experience SP are reluctant to seek medical help for fear of being diagnosed with a serious mental illness’ (p. 1199). Mavromates (1991) similarly observed that ‘many people might deny having hypnagogic experiences [usually associated with SP] because they are afraid that in doing so they would be admitting to having some kind of abnormal or pathological symptom’ (p. 5). Disclosures regarding sleep paralysis experiences seem to be affected not only by the reluctance to share such a personal experience, but also by the difficulty of putting the experience into words. The English language once had a term that specifically designated SP attacks but, as Liddon (1967) points out, this term has undergone considerable change and has lost its original meaning. Indeed, the word ‘nightmare’ originally meant ‘night incubus’ and referred to the same phenomena today associated with sleep paralysis (Hufford, 1982; Jones, 1951; Liddon, 1967). While the word ‘nightmare’ has changed its meaning to come to designate bad dreams, other terms, such as ‘night palsy’ (Mitchell, 1876), ‘cataplexy of awakening’ (Daniels, 1934) and ‘sleep paralysis’ (Wilson, 1928) are newer substitutes that reflect its original meaning. Despite this effort to replace the lost meaning of the word ‘nightmare’, none of the substitute terms have undergone a successful transition from medical into everyday vocabulary. This exacerbates the disclosure problem by making SP generally invisible. As a result, many people who are afflicted by the condition may simply choose not to talk about their SP episodes.

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The fact that there is neither a convenient language to describe a sleep paralysis experience nor a readily available cultural agreement about how to interpret such an experience not only hampers personal disclosures, but also renders medical and self-diagnosis more difficult. As Morse and Johnson (1991) point out, ‘[i]llness does not begin when the individual first comes into contact with the physician or the emergency room. Rather, there is a significant period of decision-making and self-treatment which is aimed at controlling symptoms and to healing one’s self’ (p. 3). Research suggests that being able to name a disease or disorder contributes to reassuring patients so that they feel more comfortable (Chiong, 2001; Mick, 1995; Seery, 2001). Chiong (2001) even suggests that naming a condition may result in a feeling of relief because of the medical label’s ability to make an illness less mysterious. Considering that most people in Western societies who experience SP cannot identify their condition or describe it in coherent terms (Hufford, 1982) and that few people who experience SP seek medical help for their symptoms (Cheyne et al., 1999b; Ohayon et al., 1999), the chances for receiving comfort from a rapid or successful diagnosis of SP seem low. Given the absence of a readily available explanatory framework for SP and the resulting lack of awareness about the condition, those who are affected by it need to find a way to construct their experience. For some, the process of making meaning takes place online through the exchange of personal experience narratives. Individuals with SP who come together on the internet to share their experiences and look for answers are actively participating in the social construction and diagnosis of SP—a task that has traditionally been performed by the medical community. In an analysis of posts to an electronic forum devoted to a discussion of sleep paralysis, I found that, unlike the ‘share your experience’ websites examined by Adams (Chapter 12), which frame participation as a civic obligation, forum participants did not seem to have been coaxed into sharing their experiences online (Weisgerber, 2004). Instead, they, much like the ‘well-informed patients’ in Bakardjieva’s study of home-based online health information users (Chapter 11), seem to have undergone some type of traumatic event that motivated their information-seeking behaviour. In this case, the SP experience itself acts as the catalyst that motivates individuals to become informed, not only by educating themselves about their condition, but also by embracing the position of the well-informed patient and making it ‘an integral part’ of their identity (Bakardjieva, Chapter 11).

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The activities carried out by the online SP community with regard to the social discovery—the determination that the condition exists (Brown, 1995)—and social construction of this disorder can be seen as work. Considering that illness experiences may be influenced by the way an illness is constructed (Brown, 1995) and that, in this case, the work required to produce a diagnosis or understanding of the illness is performed by lay people, it seems important to examine the relationship between lay SP constructions and a person’s likelihood to consult a health professional about the problem. In the study I describe here, I sought to examine this relationship. Study site: the sleep paralysis community forum The data for this study were collected as part of a larger study of online health communication and consisted of posts to an internet forum devoted to sleep disorders as well as information obtained through interviews with forum participants. The posts were collected by downloading all publicly available transcripts of the online interactions from the forum. Since the forum was officially designed to provide a ‘way of communicating and exchanging ideas for anyone concerned about the issues of sleep research and sleep disorders’ (BISleep Open Forum, 2002), not all messages posted to it pertained directly to sleep paralysis. Because of this, every post was screened for its relevance to SP. Posts not about SP were excluded from the data set, which consisted of 646 SP-specific posts. In addition to the messages collected from the forum, in-depth semistructured interviews with 10 consenting forum users were conducted in a private online chat room set up specifically for this study. The posts and interview transcripts were analysed using a grounded theory approach, including a three-step coding procedure consisting of open coding, axial coding and selective coding (Carpenter, 1999a, 1999b; Strauss and Corbin, 1990). Lay constructions of the sleep paralysis phenomenon Although research has shown SP symptoms to be remarkably similar across time and cultures (Cheyne, 2001; Conesa, 2000; Hufford, 1982; Parker and Blackmore, 2002), people experiencing the disorder have created a number of diverging explanatory frameworks in an attempt to make sense of the experience. They have been found to attribute not only medical (Ohayon et al., 1999; Weisgerber, 2004) but also religious (Hufford, 2005, Ohaeri, 1997; Weisgerber, 2004) or paranormal

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significance (Cheyne et al., 1999a; Weisgerber, 2004) to their symptoms. Considering that few people afflicted with SP ever consult a doctor about their problem (Cheyne et al., 1999b; Ohayon et al., 1999; Ohaeri, 1997, Paradis et al., 1997), it is important to examine how a lay construction of SP influences medical help seeking behaviours. The reluctance of those who experience SP to consult a physician has been widely described in the medical literature and was also observed in this study. Of the 646 posts, only 23 (3.5 per cent) were coded as clear instances of seeking medical advice for SP. These results are comparable to those found by Cheyne and colleagues (1999a). Forum users invoked religious, paranormal and medical explanatory frameworks, negotiated in online interactions, to make sense of their experiences (Weisgerber, 2004). The following sections treat each explanatory framework separately and examine how each of them influences forum members’ inclination to seek medical help.

The religious construction Participants who subscribed to a religious explanation of their SP refused to accept their visions as mere hallucinations brought on by a disturbance in REM sleep and, instead, believed them to be attacks by demons or devils. As a spiritual rather than a medical problem, they believed that the ‘solution’ to SP lies in faith, not in doctors or drugs. Not surprisingly, those who constructed their SP in this way turned for help to their faith, instead of science, believing that taking sleep medication would be absurd. The following posts are good illustrations of the feeling that the SP problem was one only faith could solve: I figured this was a problem that only God could help me with. (Jodi; note that users are identified by their screen-name, or first name) I have found the only way to combat this experience is through reciting ‘our father’. (Jim) There is no way to stop them [the demons] except a lot of prayer. (Vicki) I think there’s a spiritual war going on . . . . Doctors can not explain it . . . . Equip yourself with the word of God and you will be fully

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The influence of a religious construction of SP on a person’s subsequent help-seeking behaviour manifested itself quite clearly in the sources from which people sought help. Rather than turning to a medical professional, participants who explained their SP in religious terms indicated that they had requested help from local priests, theologians and even bishops in an effort to rid themselves of the demons they believed to be attacking them. Making these decisions regarding sources of help can be seen as a form of work. In the case of SP, the task of providing help may well be divided between physicians and clergy, and who is assigned this task depends less on the social regulation of the division of labour than on the way lay internet users construct their disorder. Given a construction of SP as a demonic attack, turning to experts on the topic, namely clergy and theologians, is seen as a reasonable response: I researched it on my own, even talking to a theologian about it after several instances with the ‘evil’ presence. (Trent) The medical profession does not know how to treat it because it is something they cannot treat. A Bishop told me that it is a ‘spirit’ harassing you. A Bishop can help you. (Theresa) The only thing that worked was to have my house exorcised by the local Bishop in our area. The Bishop told me that he has done exorcisms for years on homes, people, and land and some of the people suffered from sleep paralysis! After he exorcised our home, my sleep paralysis got weaker and weaker until it was gone for good. A Bishop won’t charge you for services either and it is confidential!! So call your local Bishop!! (Leslie) Although exorcism may seem an extreme response, it is not uncommon among the sleep paralysis community. Ohaeri (1997), for instance, reports a number of faith healing clinics in the Nigerian city of Ibadan run by clergy who profess to cure SP through the religious practice of deliverance. Many apparently healthy people, Ohaeri (1997) concludes, ‘seek help from religious faith healers in the firm belief that ISP [isolated

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equipped to rebuke this tormenting Demon in Jesus name and you will be FREE! (Raquel)

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I later went to a priest and was exorcised many times. I thought any thing so evil, was simply that, evil. (interview) Having undergone exorcism many times without a satisfying result, this participant continued seeking help from religious authorities until: Following all the ‘attacks’, my pastor had been telling me I had to face the thing I feared the most. He told me to say, ‘I bind Satan in the name of Jesus’ when the sleep paralysis first started. I tried this time after time for weeks, then the last time was between a 2 and 3 yr. old in bed, I whispered it and a warm velvet wave went from my head to my toes and it NEVER EVER happened again!!! (interview) As these examples show, some people firmly believe that their SP has been cured either through prayer or some type of exorcism. This belief, in turn, acts as an affirmation of the effectiveness of prayer and faith in dealing with the SP phenomenon and eliminates the need for medical help. Some forum users simultaneously accepted medical and religious explanations of SP, perceiving SP as a sleep disorder that attracts demons by disabling the body and weakening it to make it easier for the demons to attack. Considering their acceptance of SP as a sleep disorder, these individuals might be more likely to seek medical help for their problem. In reality, few of them turned to a health professional for help for fear of being ridiculed. I haven’t gone to a Dr. about it, mostly because I have had doubts about how serious a Dr. would take something like that. (Wendi) I learned many years ago not to care what medical professionals think about things like this . . . . If they don’t recognize something they tend to assume the patient isn’t credible. (KB)

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sleep paralysis] is caused by “spiritual” problems for which medical doctors have no answer’ (p. 43). Some people go through several exorcisms in an effort to rid themselves of the demons, as was the case of one of the informants interviewed as part of this study:

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Although forum participants who subscribed to a religious explanatory framework tended to seek spiritual rather than medical help, the posts and interviews collected for this study yielded two instances (one in a post, and one in an interview) of people seeking medical help for what they believed to be demonic attacks. In both cases, the person who believed he/she was being attacked by demons consulted a doctor; in both instances, the visit to the doctor resulted in a re-affirmation of the religious explanation to which the person subscribed before seeking professional medical help. The first example involved a person who consulted a doctor about SP only to be referred to a bishop for an exorcism: A medical Dr. referred me to this Bishop who helped me with my sleep paralysis. This Dr. also stated that 3 years ago he would not have believed a Bishop could help with SP, but now is a believer. NOTHING of God will hold you down and paralyze you. This Bishop who helped me stated that he has helped [get] rid of sleep paralysis in other cases. When you wake up feeling drained because of a sleep paralysis episode, it is because this ‘spirit’ is draining you of your energy. (Theresa) The last few lines suggest that Theresa believed the bishop’s explanation of SP. Her visit to the doctor, along with her subsequent referral to an expert in spiritual matters, only reinforced her belief in the religious nature of the SP phenomenon. In the interview example, the person sought medical help numerous times, despite her conviction that the SP experience was caused by demonic attacks. When asked why a doctor was consulted for a seemingly spiritual problem, the person indicated that he/she was hoping the doctor would propose a different explanation. However, no doctor ever offered such an alternative explanation, thereby re-affirming the fear that SP was caused by demons: Meeting new people and Dr.s was no help. No one knew a thing about it . . . . I asked every Dr. and looked in books about sleep and could find nothing. I always was very sure it was a demonic attack. (interview) As a result of the doctors’ inability to offer a more comforting explanation, this individual turned to a priest for help and underwent

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several exorcisms. In this case, the physician may have unwittingly relegated the task of labeling and treating the disorder to clergy, thereby introducing a new actor in the division of health labour.

Unlike individuals who subscribed to a religious or medical explanatory framework to explain their SP, those who consider SP to be a paranormal phenomenon either learned to turn their SP into a positive experience or came to believe that it was possible to do so. While the vast majority of forum users wanted a cure for SP and actively worked to prevent it from recurring, proponents of the paranormal framework not only welcomed the experience, but also reported trying to induce it, believing that SP is a gateway to out-of-body experiences and lucid dreams. These forum users thought of SP as a gift and considered themselves ‘lucky’; they looked forward to their next episode: You’re all actually the privileged; stop fearing and move on. I look forward to having this experience at 49 with the knowledge I now have, since it’s been many, many years since I did. (Linda) After I realized that it will do me no harm, all my experiences have been rather pleasant. I consider myself lucky to have this ‘disorder’. It gives me a chance to explore a whole new world, right in my own bedroom. (Alan) Those of you who experience ‘sleep paralysis’ are lucky in a way. (Shannon) It might not seem like it at the moment but if and when you take control of the SP and the ability to see creatures you will quickly find that your very lucky. (James) I feel like I have a special gift that is maturing as I get older . . . (Heather) Considering SP a gift is a hallmark of the paranormal construction and was not shared by proponents of the other explanatory frameworks. Since those using a paranormal explanation valued their SP experiences and did not want to be freed of them, they were unlikely to seek medical help. Indeed, none of the messages identified as instances of medical

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help-seeking were posted by individuals who reportedly experienced unusual bodily experiences, such as floating. To understand why some people might not want to find a cure for their SP, it is important to examine their narratives more closely, which illustrate that this terrifying (for some) disorder can in some cases lead to very positive experiences of euphoria or even bliss: I have had many episodes where I leave my body and float across the room. It is euphoric and surreal all at once. (John S.) After I let go of the force that was controlling me, I then felt this overwhelming feeling of bliss as if I was on some kind of drug, and one with everything. (Tara) Another time I was flying over the mountains like a hawk. It was a great feeling! I could actually feel my arms flapping like a bird in bed. (Maria) The conception of illness as a positive, rather than negative, aspect of life has been documented in medical literature. An historical example is that of Dostoievski who, speaking of his epileptic seizures, said: You all, healthy people, can’t imagine the happiness which we epileptics feel during the second before our fit . . . I don’t know if this felicity lasts for seconds, hours, or months, but believe me, for all the joys that life may bring, I would not exchange this one. (In Alajouanine, 1963, p. 212) The picture Dostoievski paints is applicable to the participants who refused to consider their SP a disorder and instead treated it as a valuable gift. Similar to Dostoievski, they argued that SP had opened a door for them—in this case, a door to a world of astral travel and other paranormal phenomena. And, like Dostoievski, they held what they found on the other side of the door too dearly to want to shut that door. Since medical treatment presumably results in just that, these individuals were highly motivated to avoid seeking the help of medical professionals for their SP.

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Whereas the proponents of the religious or paranormal explanatory frameworks were unlikely to seek medical help, one might expect that study participants who believe that SP is a medical problem should have been more likely to consult a doctor when faced with SP symptoms. However, despite their belief in a natural cause for the disorder, few of those who constructed their SP medically actually sought medical help. Their online posts indicate that their reluctance to do so stemmed from a fatalist attitude towards SP and a fear of receiving an undesirable diagnosis, reflecting a conviction that doctors could do very little about SP and that they would not take it seriously. As a result, it was not worth wasting time and money to seek medical help. For example, I told a doctor about it only once and was put off by his lack of interest. (KB) I mentioned it to my family doctor who simply blew it off. (Donna) No one could put a name to what I had happen to me that day not even the doctor. He just shook his head and told my dad: ‘I don’t know what’s wrong with her’. (Lucinda) I’ve told several doctors (including psychiatric doctors). No one had ever heard of it. I thought I was nuts. (Lucy) Such accounts may do little to encourage fellow forum participants to consult a physician about their SP. In addition to the fatalistic mentality adopted by many of the participants who subscribed to the medical explanation, the fear of receiving an undesirable diagnosis also added to their reluctance to seek medical help. An abundance of posts testified to users’ fears that their experiences were symptomatic of a serious disease, tumour or mental disorder: Oh, I am so glad I don’t have a brain tumor and I’m not dying. (Gina) Now that I’ve read up about it and know I’m not alone, it’s not as bad as the first time, when I could have sworn I was being watched

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The medical construction

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I’ve had sleep paralysis for years and thought I was really mentally ill. I didn’t tell anyone. (John R.) In fact I thought I was going crazy until I heard of this. (Michelle) I was beginning to think that I was seriously emotionally disturbed or something. (Gary) Despite their suspicion that something was wrong with them, these people did not report seeking medical help for their SP, perhaps because they were afraid that a doctor might confirm their worst fears, a common finding in the literature on psychiatric disorders (Kendell, 1975), and in general medicine more broadly (Mick, 1995). In the case of the posts studied here, the fear of being diagnosed with a mental illness (or less frequently, a cancer) was sometimes strong enough to dissuade seeking a medical opinion. Rather than risk receiving a highly undesirable diagnosis, many participants preferred to live with their fears, sometimes for decades.

Conclusion The data analysed in this study suggest that the work of interpreting symptoms and labeling the disorder of sleep paralysis has ‘e-scaped’ into the online context (Nettleton, 2004) where it is often performed by lay people, particularly by those who have had SP experiences. Like the well-informed patients described by Bakardjieva (Chapter 11), individuals in the present study went to the internet to educate themselves about their symptoms and to become lay SP ‘experts’. They came together online to share their experiences and to look for answers, actively participating in the creation of a cultural agreement concerning what it means to be affected by SP. The importance of this lay role in ‘meaning-making’ is underscored by the fact that medical studies have started to include online descriptions of patient experiences in scientific journals (Cheyne et al., 1999a, 1999b; Terrillon and Marques-Bonham, 2001), supporting Webster’s (2002) claim that medicine is increasingly

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by some evil shadow and later thinking I had a tumor or some other neurological disease. (Jessica)

Disorder Construction as Lay Work

becoming information-based, and characterised by a recognition that patient experiences comprise an important form of health knowledge (Nettleton, 2004) and ‘expertise’ (see Wilcox, Chapter 4). Considering that SP is a relatively unknown sleep disorder, the online community may be actively participating in the ‘social discovery’ of the condition, the first of four stages in the social construction process ‘in which people, organisations, and institutions determine that there is a disease or condition’ (Brown, 1995, p. 37). Along with discovery, the different ways in which people experience illness, their beliefs about appropriate ways to treat it, as well as factors affecting the outcome of that illness, all contribute to an on-going process of illness construction. The analysis I report here suggests that the ‘meaning work’ performed by the online sleep paralysis community not only influences the way individuals see their disorder, but also whether or not they are likely to consult a physician about their experiences. Although the reasons for avoiding medical help varied for each of the explanatory frameworks described earlier, the results were strikingly similar. Few people who subscribed to these explanations ever consulted a doctor about their sleep paralysis, although their reasons for not doing so were substantially different. Whereas those who accepted a religious explanation of SP rejected medical help because they perceived their SP as a spiritual rather than a medical problem, those who used a paranormal explanation refused medical help because they did not perceive their SP as a problem. Even those who believed that their SP was a medical problem with a physiological cause avoided physicians because they did not feel that doctors could help them (or might minimise their experiences) and/or they were afraid of a bad diagnosis. Brown (1995) notes that attributing physiological rather than pathological causes to an illness is part of its social construction and may altogether alter a person’s illness experience. My findings suggest, however, that current online constructions of SP by forum users often stand in stark contrast to the latest research findings about sleep paralysis. Whereas scientists, in their journal literature, are constructing SP as a relatively harmless parasomnia associated with REM sleep, those who discuss their SP experiences online paint a much bleaker picture, replete with demons, devils and mental illness. By democratising access to health information and enabling regular citizens to become producers of health knowledge, the internet creates a space for competing constructions of sleep disorder phenomena. In essence, we are witnessing a key consequence of ‘e-scaped medicine’—the medical profession’s loss of control over health knowledge. Indeed, as Nettleton (2004) argues,

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‘as medical knowledge “escapes” and is “e-scaped”, the ability of the medical profession or laboratory scientists to shape the content of medical knowledge diminishes’ (p. 676). The rejection by some online forum participants of a medical conceptualisation of sleep paralysis, with all its implications for the quality of life of the people who live with the disorder, is a prime example of this loss of control.

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Corinne Weisgerber

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Part III

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Facilitating Patients’ Hope Work Through Relationship: A Critique of the Discourse of Autonomy Pär Salander and Clare Moynihan

Taking a Foucauldian approach to ‘discourse’ (Foucault, 1973), this chapter explores the transformation, in the context of health care, from a previously dominant discourse of ‘paternalism’ to the present, increasingly dominant discourse of ‘autonomy’. The discourse of autonomy is focused on communication and information giving, especially as it pertains to ‘bad news’. According to Foucault, ‘discourse’ can be conceptualised as a system (or systems) of thought composed of ideas, attitudes, courses of action, beliefs and practices that systematically construct the subjects of the worlds of which they speak. Their role can be defined as one of legitimation and power with an emphasis on the construction of ‘truth’, how that truth is maintained and the power relations they carry within them. Indeed the concept of power is omnipresent and can both produce and constrain ‘truth’. As Salmon and Hall (2003) have argued, ‘new’ discourses do not necessarily displace previous ones; they may coexist and even become intertwined, but at the same time ‘new’ discourses may be responses to tricky and problematic earlier ones. The function of the discourse that pertains to the one we name the discourse of autonomy can only be understood by addressing its history, and the way it may combine and contrast to a ‘new’ one (Salmon and Hall, 2003). The underlying theme of this chapter will be a critical analysis of the patient–physician relationship, especially in the context of communicating information (including ‘bad news’) in cancer care and as depicted in the discipline called ‘psycho-oncology’. An historical perspective will be complemented by empirical studies to illustrate the pitfalls of reducing ‘good communication’ to a matter of solely transmitting information. ‘Psycho-oncology’ is a relatively new discipline. The last 113

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Galen—paternalism—autonomy Galen In the first century AD, Galen and his followers established a biomedical paradigm that dominated the next millennium. Galen’s pharmacy consisted of crocodile dung, swine teeth, ass’s hooves, the spermatic fluids of frogs, eunuch fat, fly specks, dried viper, feathers, hair, bricks, human perspiration, moss scraped from the skull of victims of violent death and 808 additional substances (Shapiro and Morris, 1978). Despite, or because of, these drugs and potions, people visited Galen and his followers for over a millennium, and, in turn, practitioners maintained their position of honour and respect. Why was this the case? At all times and in all places, sick, vulnerable people seek help for medical ailments (Frank and Frank, 1991). When faced with troubling situations and a sense of powerlessness, we cannot afford to neglect the possibility of help. Thus, despite Galen’s (probably) worthless substances, the healing they conferred to the sick helped to alleviate psychic and physical pain. The main biomedical problems probably persisted, but the fact that Galen’s ‘clinics’ flourished was an indication of people’s reliance on them. It is not too far-fetched to suggest that the therapeutic benefit of simply looking for and receiving help contributed to their success. We allude to Galen in order to highlight the suggestion that people are not passive receivers of help but active agents in creating the healing context—the need for help when we are sick or wounded. The existential predicament of the vulnerable ‘patient’ was the same in Galen’s Greece as it is today. ‘When facing a fate that cannot be changed, such as inoperable cancer, we are challenged to change ourselves’ (Frankl, 1957, p. 116) and without doing so it is likely that we feel despondent and demoralised. According to Frank and Frank (1991), quoting Parloff (1986), in their antropo-psychologic search for the essence of healing, ‘psychotherapy achieves its effects largely by treating demoralization and only indirectly by treating overt symptoms’ (Parloff, 1986, p. 522). ‘Healing’ then, is not simply a matter of instrumental intervention but also relies on a contextual experience.

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20 years or so have seen its ascendancy as it promotes autonomy while enabling the discussion of cancer, death and dying, within the context of ‘good communication’ and where the transmission of information takes precedence over all else in the doctor–patient ‘relationship’.

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The best outcomes are facilitated by four dimensions in what Frank and Frank (1991) call ‘the healing context’. First is medical authority, that is, access to persons who identify themselves as able to help. Importantly, people in need of help must also regard the medical authority as someone who can provide relevant care. Similarly, both must regard the milieu as conducive to care, whether it is a hospital, a church or a tent. ‘Helping’ must, ideally, be the sole activity in that milieu if it is to achieve its helping potential. Third, there must be a theory that (irrespective of its ‘truth’) is respected by both the healer and the person in need of help. This applies to all medical interventions. Finally, the two protagonists must agree on and believe in the helping ritual, for example, the laying on of hands, verbal interpretations of ‘the problem’ or tablet swallowing. It is crucially important that the theory behind the ritual is in accordance with the patient’s worldview, attitudes and values. The emphasis on context articulated by Frank and Frank (1991) is in accordance with contemporary research in psychotherapy, where increasing evidence suggests that progress, at least initially, is not connected to differing schools of technique, but to the context and the ability to create a working alliance between patient and therapist (Miller et al., 2008; Wampold, 2001). In other words, the common factors in psychotherapy explain more than the specific factors connected to any one therapeutic model (Wampold, 2001). The therapist’s technical acts are not curative per se, but essential as creators of a coherent theory in accordance with the patient’s own belief system— an important ingredient in the healing context. Thus technique is not unimportant, but therapeutic success is dependent on how the technique matches the patient’s definition of her/his needs and ideas of what can be curative. There appears to be sufficient scientific evidence for the ‘contextual model’ to stand in relation to the ‘medical model’, suggesting that it is not a special technique that takes centre stage, rather patient and therapist are two parts in a ‘healing context’, based on a common belief about what is good for the person in need of help and hope.

Paternalism and the era of white lies Following Galen’s path, Voltaire, the eighteenth century French Enlightenment philosopher, illuminates the ways in which paternalism flourished by stating that ‘a lie is a lie when it causes harm, but a blessing

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Your patient has no more right to all truth you know than he has to all the medicine in your saddlebags . . . . He should get only as much as is good for him . . . . Nothing on the whole has covered so much ground, and meant so little, and given such profound satisfaction to all parties as the magnificent phrase ‘digestion of the portal system’. (Holmes, 1883, p. 388) The discourse of paternalism, at the ‘core’ of which is the ‘white lie’, was well and truly established. Dr Holmes lied but the patient was protected from despair while the physician, we assume, not only protected his own reputation as a father figure who ‘cured’ with little information given and without the patient’s participation in any decision-making process, but also adhered to the medical discourse of the day. The nineteenth century saw an era that enveloped what Jewson (1976) calls ‘hospital medicine’, an era when the patron was replaced by the state via the hospital. Industrialisation and urbanisation resulted in an increase in expenditure on hospitals that, in turn, evoked a space in which the ‘body’ of the patient played an important part in the progression of medical research. Thus, the powerlessness of the patient was a crucial factor in the rise of professional medical dominance. A full reading of Jewson’s seminal papers (Jewson, 1974, 1976) indicates the ways in which various ‘modes of production’, such as ‘bedside’, ‘hospital’ and ‘laboratory medicine’ emerged, but did so in a political, social and economic context. In other words, powerful subagendas are at play in different moments in history and in medical situations that are generally considered to be entirely objective and neutral. Following Jewson, Armstrong (1982) focused on the 1960s, during which a massive move back to focus on the individual patient was evident. The same ethos remains to this day, although its form has changed. Rather than patients being conceptualised as ‘passive objects’ to be patronised, they should be treated as more than a receptacle of morbid processes (Foucault, 1973). Indeed, as Armstrong (1982) points out, the patient was imbued with personal meaning, constructive feeling and subjectivity. Now ‘subjectivity’ goes further; the patient becomes all

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when it does good’ (Weil et al., 1994). Even if the physician understood that the patient was beyond saving, it was his duty to keep this knowledge to himself. The well-known American physician and philosopher Oliver Wendell Holmes illustrates the paternalistic discourse in clinical practice in a book for medical students:

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knowing and ‘autonomous’. However, following Jewson, it would be a mistake to take these ‘shifts’ at face value.

During the 1960s and 1970s, ‘whole person’ medicine was endorsed and espoused (Armstrong, 1982), and handed control to the individual through the advocacy of ‘self help’ (DHSS, 1976). While medicine advanced, there was also a growing disillusionment with medical efficacy (Cochrane, 1972; McKeown, 1976; Powles, 1973). The response was a concerted effort by the state to reduce expenditure and to shift priorities, strongly advocating the concept of ‘self’ and thereby attempting to shift the monumental expense of curative medicine away from the state to ‘everybody’s business’. People would be expected to take care of their own health while medicine absolved itself of responsibility (Crawford, 1977). This policy remains highly relevant (Annandale, 1998; Department of Health, 2004; Salmon and Hall, 2003; Wanless, 2004). Patients must no longer be left in ignorance and, if they are to be responsible for their own health, their demands and their ‘right to know’ become sacrosanct, facilitated by new information technologies and wider societal factors (see Spoel, Chapter 5, on the moral imperative of ‘healthism’). This is mirrored by the ways in which serious disease, such as cancer, has been discussed more openly since the early 1960s (Novack et al., 1979), and laws were changed so that patients’ ‘informed consent’ was needed prior to the administration of any medical intervention (Faden and Beachamp, 1986; Waller and Repko, 2008). Paternalism was challenged, at least in North American and European countries, and the era of autonomy was born. The discourse of autonomy Leo Tolstoy’s novel, The Death of Ivan Ilyich, written in 1886, reinforced the paternalistic discourse of that time but also illustrated the burden it put upon the cancer patient. Ivan was stricken with cancer; he was in pain and intuitively understood the seriousness of his case, but neither his physicians, nor his friends or family were ready (or able) to discuss his disease with him. The novel became a symbolic narrative of the despair connected to paternalism (and the era of hospital medicine) and was often referred to as a contrast to the new, so called ‘humane’ ambitions of informing the patient (see Tolstoy, 1976). Since the 1980s, researchers in the field of psychosocial oncology have followed assiduously the self-help (or autonomy) mission. Their quest is to establish

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Paternalism is challenged during the 1960s and 1970s

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The current approach derives from a new emphasis on individual responsibility and the right to control one’s own living and dying. Informed consent, open communication, full disclosure and patient information are expressions of the contemporary focus. (Cassileth et al., 1989, p. 832) The essence of cancer communication no longer advocates ‘protecting’ the patient from despairing facts; rather, its simplistic essence is to gather ways of informing patients so that they can protect themselves through a relationship characterised by ‘partnership,’ thereby ‘empowering’ them to do ‘their own work’ (Salmon and Young, 2005). In other words, the empowerment perspective is equivalent to self-determination (Aujoulat et al., 2007). This stance is funnelled through the concept of information giving and has become an overwhelming endeavour in the field of cancer care. A plethora of studies focusing on the importance of providing information, especially ‘bad news’ through ‘good communication’, has influenced medical practice (Cassileth et al., 1989; Fallowfield et al., 1995; Fallowfield and Jenkins, 2004; Wong et al., 2000). It is as if the strong arm of the law has dictated that patients require, indeed demand, that they should be given all information at all times, while clinicians are taught the rudiments of ‘how to tell’, what to ‘disclose’, how to ‘transmit’ or ‘send’ ‘bad news’. The task now, is to ‘close the gap between the patient’s perception of the situation and the reality of the situation’ (Bennett and Alison, 1996, p. 26). It is thus no longer a matter of balancing information provision in order not to ‘discourage the patient and to depress his spirits’, but the ‘voice of the life world’ should be wiped out in favour of the monopoly of the ‘voice of medicine’. The pendulum has swung. Paternalism was a catastrophe because the helper was ‘economical with the truth’, the patient alienated and alone. The discourse of autonomy could also be described as catastrophic if we consider the loss of the ‘healing context’. Franz Ingelfinger, the former Editor-inChief of The New England Journal of Medicine, when newly diagnosed with prostate cancer, wrote: He (a good friend and colleague) was telling me to forget the information I was receiving from many quarters, and to seek instead a person who could tell me what to do, who would in a paternalistic manner

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a way of conceptualising the patient in a manner as far away from paternalism as possible. This quote illustrates the new ethos:

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Ingelfinger’s reflection illustrates the possible consequences of the transition from ‘paternalism’ to ‘autonomy’. We do not have to condone the problems inherent to paternalism to understand that ‘information giving’ cannot be a substitute for the concept of a ‘relationship’. It is not enough to know about the latest treatments and their side effects or that we are soon to die. As sick people, we have to rely on someone to trust, and, as health professionals, we have to provide a ‘healing context’ for its manifestation. At the same time, the validity of studies that uphold the ubiquitous march to information giving needs questioning. First, the very word ‘information’ is assumed, in Western society, to be universally positive; people should be well informed. Second, behaviour may be confused with attitude. Studies in which response items are not developed by the health care provider but emerge from the experiences of participants/patients arrive at more complex conclusions (Kaplowitz et al., 2002; Leydon et al., 2000; Lutfey and Maynard, 1998; Perakyla, 1991). People with cancer do not necessarily wish for information and often complain of ‘information overload’, sometimes wanting it paced to accommodate their context. Third, the word ‘information’ may lend itself to several meanings. When people tick a box that indicates a need for ‘more or as much information as possible’, it is conceivably the case that they are indicating a wish for closer contact with their health care professionals. Fourth, we question the meaning of ‘full disclosure’ and whether this is possible in the first place. Does this concept have a neutral meaning? Could it be the case that this dictum is determined by those who orchestrate medical resources and expenditure to fulfil legal requirements and/or internal controls? (see Salmon’s discussion, Chapter 9, regarding interest groups and ‘communication as skill’). The same axiom exists when the concept of ‘shared’ or ‘individual decision making’ is introduced, namely that patients wish to make decisions in the name of ‘autonomy’ and ‘empowerment’ (Cassileth et al., 1980; Feldman-Stewart et al., 2000; Onel et al., 1998; Vertinsky et al., 1974; Wong et al., 2000). There is a contradiction in this claim, however. First, as discussed above, ill people from the time of Galen experience vulnerability and strive for a relationship with helping professionals. Patients are not ‘empowered’ by disregarding this fact. When confronted with a malignant disease, help does not come from people

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assume responsibility for my care. When this excellent advice was followed, my family and I sensed an immediate and immense relief. (Ingelfinger, 1980, p. 1510)

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as powerless as ourselves. This implies asymmetry, not ‘partnership’! Indeed studies have shown that physicians and patients define their relationship as ‘asymmetrical’, between layperson and ‘expert’ (Hydén and Mishler, 1999; ten Have, 1991; Maynard, 1991). Second, while the concept of ‘shared decision making’ chunters its way through the arena of oncology, there are empirical studies questioning its validity (Clark et al., 2001; Degner et al., 1997; O’Rourke, 2001; Skelton et al., 2002; Wright et al., 2004). Not only is there evidence that patients are less likely than physicians to make use of the pronoun ‘we’ in consultations (Skelton et al., 2002) but patients who have cancer are shown to abnegate responsibility (Davison and Degner, 1997; Degner et al., 1997). Moreover, the concept of regret is voiced by prostate cancer patients whose involvement in management is continually researched and encouraged and where the clinician is often uncertain as to what the best course of action may be (Clark et al., 2001). This is not surprising if we consider the possibility that patients may tick a box to indicate involvement in decision making because they wish to ‘have the option’ to feel respected and acknowledged (Wright et al., 2004). This argument is mirrored in our own experience. When patients are confronted with the question, ‘what treatment do you prefer?’ invariably the answer is, ‘what do you suggest, doctor?’. Moreover, patients do not, in reality, have ‘a choice’ as to what treatment they may receive. Instead, they are given ‘options’ regarding treatment; options decided upon by powerful political lobbyists, medical (quasi) non-governmental organisations and economists (Annandale, 1998; Brennan and Moynihan, 2004). Despite these ambiguities, monies from cancer research funders have been continually and generously forthcoming. The last 15 years has seen the emergence of ‘communication skills training’ (Fallowfield et al., 1995; Fallowfield et al., 2002; Maguire, 2000), the core of which is ‘information giving’, the sine qua non of clinicians’ training as far as a ‘relationship’ with the patient is concerned. ‘Communication skills’, a set of pre-determined tasks and solutions akin to clinical skills, learned and imparted by trained professionals (see Salmon, Chapter 9, and his discussion on the concept of ‘skill’ in this context) ‘onto’ their patients has become an overpowering mission in cancer care, albeit void of a theoretical underpinning. It is not uncommon to hear, however, that by using a pre-designed methodology, and a medical perspective to assess their own endeavours, authors overwhelmingly report success (for example, using more emotional words is per se an expression of improvement!), both in the short (Fallowfield et al., 2002) and long term (Fallowfield et al., 2003). The picture is not entirely

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straightforward however. An objective systematic review found that training outcomes remain ambiguous (Moore et al. 2009). No differences were found between doctors trained in the ‘good skills’ of summarising and checking. It is not known whether training might be effective if taught by ‘other people’ than those who dictate the rudiments of ‘good communication’, nor do we know the comparative efficacy of these programmes or their relevance in a naturalistic setting or the effect of training on patients’ well-being. Be that as it may, these training courses are held in the wake of providing information to ‘empower patients’ and to enhance entry into randomised controlled trials (Cox et al., 2006). The concepts of ‘relationship’ and ‘attachment’ are invisible in the training and outcome literature. We go so far as to suggest that strict rules of communication, such as they are, may eclipse and disrupt the emotional nature of a caring relationship, one where the importance of empathy encouraged by training specialists does not compensate for a negation of a sense of dependency or attachment and of listening to and ‘containing’ the patient by providing hope in desperate circumstances. This disruption, as it promotes a professional ethos of disengagement (see Spoel, Chapter 5), ‘fits’ with the adage of self-responsibility, of so-called ‘autonomy’, while meeting the demands of contemporary quality control specialists (see also Salmon’s scrutiny of the divergence between clinical reality and skills training, Chapter 9). As well as the seemingly successful and expensive skills training courses held, incidentally, in what might be categorised as five-star hotels, (for example, Website Psychosocial Oncology, Communication Skills Training, Brighton University, Sussex UK) and where actors simulate patients, we are told that ‘full disclosure’ lessens ‘anxiety’ and ‘depression’ and increases ‘quality of life’ (Davies et al., 2008; Rutten et al. 2005). We wonder whether those people who sense ‘information overload’ or who are offered the often onerous task of making a regrettable decision regarding a life and death situation, may also feel less ‘anxious’ or ‘depressed’ as they become separated from the work of ‘relationship’? We agree with Salmon and Hall (2005) when they explain that the discourse of ‘autonomy’ or ‘empowerment’ absolves medical responsibility while imposing it on the patient. For, once information is given, the onus to live or die is firmly placed with the patient who becomes disconnected, and alienated. When leaving the paternalism of Scylla be aware of the abandonment at Charybdis! To summarise, since the days of Galen up to the 1960s, a discourse of ‘paternalism’ dominated the doctor/patient relationship, including

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Pär Salander and Clare Moynihan

Facilitating Patients’ Hope Work Through Relationship

the telling of ‘white lies’ in the name of protecting the patient from distressing information, while violating respect and integrity. However, ‘paternalism’ also reflects an understanding of the patient’s dependency needs. Changes in medicine and the wider society undermined the discourse of paternalism. The discourse of autonomy for patients emerged, championed by the ‘new’ discipline of psycho-oncology. Now, the patient–physician ‘relationship’ is reduced to the communication of information as medicine absolves itself of responsibility. Health professionals are trained in ‘communication skills’, especially as they pertain to the communication of ‘bad news’ information. The relationship between the doctor and the patient is reified to a ‘partnership’ where the patient is regarded as ‘grown up at last’! (Coulter, 1999).

Patient-focused empirical studies and ‘hope work’ The patient’s perspective When scrutinising discourse it is a good idea to ask whose voice we are listening to and whose perspective is presented. Notwithstanding the possibility that the ‘empowerment’ lobby appears to favour the ‘oppressed’, the discourse of communication and information giving has stemmed from medicine’s perspective (Salmon and Hall, 2003). Studies that attempt to define patients’ information needs through the use of surveys tend to format their designs from the perspective of the health provider without regard to the patients’ own goals (Carlson et al., 2005). The same may be said about the concepts of ‘telling and receiving bad news’ based, as they are, on surveys of patients’ needs as interpreted by physicians’ experiences (Parker et al., 2001; Ptacek and Eberhardt, 1996). Publications that reveal the health service perspective in the context of giving ‘bad news’ and information proffer a consensus that includes quiet, structure, what to say and how to say it honestly and with empathy. As reasonable as this may seem, a crucial question still remains: does the ‘autonomy’ discourse encompass patients’ own needs in the ‘bad news’ encounter? Two of our studies indicate the ways in which cancer patients felt about how diagnosis was received, their reactions, subsequent benefits or detrimental incidents (Salander, 2002; Salander and Henriksson, 2005). Disclosing bad news was not considered a priority, a surprising contrast to the vehement message given in the cancer literature. Instead, patients seemed to have a broad perspective, retrieving experiences from contacts with the health care team that helped them to

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do their own ‘hope work’ (Perakyla, 1991). Bad news communication was mentioned, but recounting peoples’ experiences from the time they noticed symptoms to the present took centre stage. Further in the patients’ cancer journey, the bad-news question was described in terms of a process, not by relating a single event of information but through differing aspects of the relationship to health care, from symptom development to the end of treatment. We are guided in time and space as subsequent contacts with health care personnel are recounted (Salander, 2002). Patients spoke of their concern for ‘connection’ and a need for acknowledgement and only a very few were concerned about information issues (Salander and Henriksson, 2005). Similar findings have been found where a qualitative approach has been taken and where patients’ own accounts are given credence. Wright et al. (2004) found that breast cancer patients were primarily concerned with their physician’s competence: that s/he was personable and respected the patient’s integrity. Parker et al. (2001) found that the physician’s competence and the time given to patients were more important than providing information.

‘Hope work’ ‘Hope work’ is a concept developed by Perakyla (1991). Using participant observation of health professionals, their patients and relatives in various hospital contexts, he found that protagonists in a medical encounter engage in negotiating ‘hope work’ that includes its dismantling. This ‘work’ is often intense, interactional and may result in a shared interpretation of the meaning and manageability of the condition in question. He shows that well-established but vulnerable ‘medical frames’ are restored through hope work in the face of death, but always by using simple conversational devices that differ according to a specific context such as palliative or curative care. ‘Hope work’ is depicted as an essential part of medical practice relying heavily on the intuition of the professional to know when and how to offer hope, while striving for synchronicity with the thoughts and conversational activities of patients and their families. Perakyla (1991) points to the essential aspects of this sensitive dynamic that, more often than not, goes unrecognised as ‘work’. It involves a connectedness and personal care that is not discussed in the autonomy discourse in the field of psycho-oncology. While ‘hope work’ as we conceive it is ignored within the discourse of autonomy, the idea of ‘sustaining hope’ in communicating with

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Pär Salander and Clare Moynihan

Facilitating Patients’ Hope Work Through Relationship

seriously ill cancer patients has been discussed in the psycho-oncology literature but is always restricted to the context of information giving, without a theory of connectedness and relationship (Clayton et al., 2008; Hagerty et al., 2005). We suggest that hope can be conveyed in tandem to the information-giving task. Indeed there is evidence that patients wish for hope in ways that counter ‘bad news’ information (Leydon et al., 2000). Leydon (2008) has, for instance, demonstrated the ways in which clinicians intuitively seem to impart information to their patients in optimistic terms, following ‘bad news’ with ‘good news’ in ways that suggest that there is an implicit understanding that the patient may need something more than ‘truthful’ bad news information. We sympathise with the concept of ‘hope work’. However it must be said that ‘work’ incurs patient burden. We suggest that there may be value for patients engaging in this effort as it redresses the unequal power relationship between patients and providers without asking that self-responsibility prevails. We also bear in mind that clinicians are participators and facilitators of patients’ own ‘hope work’ where doctor/patient relationships must be built and maintained, where the emotional (or ‘immaterial’) labour of work, however ‘hidden’, is given credence and where connection, closeness, competence, continuity and personal acknowledgement are given room to manifest themselves. Thus, the blend of emotional and practical endeavour, of balancing honesty and hope, will create the healing context as it guards against a reductionist stance that reduces that relationship to one of senders and receivers of information. We do not hark back to paternalism. We are suggesting a ‘new paternalism’; one that counteracts an approach to doctor–patient communication that has turned its back on the concept of ‘attachment’ (Bowlby, 1979; Brennan and Moynihan, 2004; Lilliehorn et al., 2009). It seems time to address the internal world of patients and how we may facilitate their own creation of hope, their own ‘hope work’ by creating a ‘facilitating environment’ (Winnicott, 1984). Time passes, but our existential predicament has not changed since Galen’s time. As children we are powerless and to feel secure we rely on our parents’ real or imagined power. As adults stricken by a malignant disease, we have to rely on health care and its real or imagined power. We are not autonomous—we cannot be autonomous in the medical arena. And while we may not be passive receivers of health care, we are certainly dependent beings especially when facing serious disease. As John Bowlby, the doyen of ‘attachment theory’ says:

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Conclusion It is time to disregard the discourse of autonomy and to initiate a new one where patients’ own perspectives are listened to and acted upon. Instead of focusing on patients’ pre-conceived information needs, it is time for an inductive approach focusing on how health care can best help patients who find themselves in vulnerable situations. A few of the studies presented here tentatively acknowledge the importance of establishing a ‘helping relationship’. The important question is how that relationship may be transferred from theory to clinical practice, thus facilitating the patient’s own ‘hope work’.

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Whilst especially evident during early childhood, attachment behaviour is held to characterize human beings from the cradle to the grave . . . . There is nothing intrinsically childish or pathological about it. (1979, pp. 129, 131)

The Work of Clinical Communication in Cancer Care Peter Salmon

In interactions between patients and health practitioners in which serious disease such as cancer is involved, communication is the vehicle for exchanging information and organising treatment and has profound implications in its own right for patients’ recovery and well-being (Street Jr. et al., 2009). Patients regard practitioners’ power to help—or harm—them as residing in their communication and interaction, not just in physical treatments (Thorne et al., 2008). This chapter examines the work of clinical communication from two perspectives. The first concerns the work that patients and practitioners actually do in consultations as they manage the demands of treatment and disease. The second is the way in which communication has been developed into an aspect of practitioners’ formal role as employees. Unfortunately—for the patients who need good communication and for the practitioners who want to provide it—we shall see that these two types of work diverge: employers’ demands on practitioners for communication work do not always address the aspects of communication that would help practitioners and patients in consultations.

The work of communication in practice: studies of doctor–patient dialogue Research into what patients seek from consultation demonstrates the difficulty facing practitioners. Particular challenges arise from patients’ need for information. Providing accurate, honest and timely information about disease and treatment is arguably an ethical requirement on practitioners and is also important for securing patients’ engagement in treatment and care. Moreover, surveys report that most patients say that they want to be fully informed (Jenkins et al., 2001; Meredith et al., 126

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1996). However, it is also clear that patients do not value information at all times and in all situations and some do not want much information at all (Salander and Henriksson, 2005; Wright et al., 2004). Patients desire hope, and many do not want information that would destroy hope (Clayton et al., 2005; Kirk et al., 2004; Leydon et al., 2000; Wright et al., 2004). One survey put the dilemma facing practitioners into sharp focus: while 100 per cent of patients wanted the doctor to be honest, 91 per cent also desired optimism (Kutner et al., 1999). Practitioners, many of whom share the belief in the importance of maintaining hope (Clayton et al., 2005), face a complex dilemma. If they are to provide what patients seek, they cannot conduct consultations according to simple rules, such as ‘provide all available information’. The slightly more complex rule to tell patients what they wish to know appears beguilingly attractive but is implausible (Downie and Randall, 2005). Patients evidently say they want to ‘know everything’ when they do not; conversely, not to inform a patient who does not want to know about serious disease that needs treatment could abrogate clinical responsibility. Moreover, there is a logical problem with this widely cited rule. Patients cannot be relied on to say what they want to know because they would first have to know what there is to know! Studies of how consultations are conducted show that practitioners do not follow simple rules about providing information. Instead, they join with the patient in intricately managing dialogue to achieve and balance their potentially conflicting aims, particularly in doing ‘hope work’ as Salander and Moynihan (Chapter 8) describe. Practitioners carefully restrict and shape the information that they give (Leydon, 2008; The et al., 2000; Thorne et al., 2007). Correspondingly, patients restrict the information that they seek or hear (Leydon et al., 2000), and deploy many devices for construing hopefully what they are told, such as not requesting or not hearing unpleasant information (Salander, 2002; Salander et al., 1996; Thorne et al., 2006). That is, practitioners and patients collaborate in doing considerable work in consultation to manage their dialogue around the areas of honesty and hope in the context of ongoing clinical care. Patients with serious disease such as cancer are less keen on taking responsibility for treatment decisions than are those with less serious disease and are less keen also than healthy people think they would be if they developed cancer (Degner and Sloan, 1992; Say et al., 2006). Nevertheless, practitioners are often encouraged to provide patients with information so that they can make informed decisions. However,

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Peter Salmon

The Work of Clinical Communication in Cancer Care

decision-making, also, is often more complex and subtle in practice than this view implies. In her chapter, Spoel (Chapter 5) illustrates how rhetoric in ‘informed choice’ discussions often thinly masks practitioners’ attempts at persuasion. Moreover, the ‘zero-sum’ concept of responsibility for decision-making that underlies research literature, whereby if the patient is to feel more empowered, the practitioner must give up some power, is hard to reconcile with findings that practitioners can help patients feel involved even where they feel no choice (Henman et al., 2002; Wright et al., 2004). Additional requirements for communication in consultations about cancer make the practitioner’s task more complex still. In particular, both patients and practitioners describe the importance of having a good clinical relationship (Salander, 2002; Salander and Henriksson, 2005). Relationship is a tricky concept to pin down, because it cannot be described as a single objective entity: the intense subjective relationship which the patient needs and feels diverges inevitably from the professional commitment that the practitioner feels and is only indirectly linked to the communication that passes between them (Salmon and Young, 2009; Zoppi and Epstein, 2002). From the patient’s perspective, the essential element is to be confident in the practitioner’s commitment to care (Leydon et al., 2000; Wright et al., 2004). While researchers and theorists are still unclear about what makes caring feel ‘authentic’ (Salmon and Young, 2009; Steele and Hulsman, 2008), many practitioners have clearly worked this out in their practice. Practitioners have to communicate their expertise too, without appearing paternalistic, so that patients can put their trust in them (Leydon et al., 2000; Wright et al., 2004). The multiple functions that communication serves cannot usually be addressed in different segments of the consultation (such as by separating information-giving from negotiating treatment, for example) or by discrete elements of practitioners’ behaviour (such as using information to satisfy ethical requirements and then using treatment recommendations to build hope). Anything that the practitioner says or does will have multiple effects. For example, providing information from laboratory tests can help to convey expertise or lose patients’ trust, can demonstrate caring or disdain and can support or destroy hope (Henman et al., 2002; Leydon et al., 2000). Therefore, individual practitioners’ accounts of managing communication with patients often defy description by simple rules and, instead, display intuition and uncertainty in finding creative solutions (Ting, 2006).

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To approach clinical communication in cancer care from the viewpoint of educators and policy makers means taking a very different perspective. Health policies across the world now routinely emphasise the central importance of good communication between practitioners and patients for the effectiveness and quality of cancer care (Expert Advisory Group, 1995; UK Department of Health, 2000; Epstein and Street, 2007). However, it is in the technologies for delivering this that divergence from the clinical perspective arises. The main technology has been to regard clinical communication as made up of skills, and curricula have been established to train practitioners and students in these ‘communication skills’. Undergraduate curricula therefore include communication skills as core components (Brown, 2008; von Fragstein et al., 2008) and, in the UK, a ‘National Advanced Communication Skills Training’ programme has been launched by the UK National Health Service for senior practitioners working in cancer in order to standardise training nationally (UK Department of Health, 2007). Policy guidelines set out clear expectations for practitioners’ performance of communication (National Institute for Clinical Excellence, 2004), and training technology is developed and applied by a growing body of communication educators supported by a burgeoning field of research. These educators work for government agencies, such as the UK NHS, or for private health-care providers rather than professional bodies. Although course content varies, practitioners can be taught, for example, how to facilitate patients’ talk, particularly about personal and emotional aspects of illness, how to provide information including bad news, how to achieve compliance with treatment and how to manage patients or others’ emotional reactions. Methods typically prioritise role-playing and experiential techniques as well as formal teaching. Clinical communication as communication skills The metaphor of ‘skill’ underpins this enterprise. ‘Communication skills’ sit naturally in the context of professional training and management: clinical students learn ‘communication skills’ alongside ‘clinical skills’, and practitioners can ‘top-up’ or ‘update’ their communication skills alongside their skills in, for example, cardiopulmonary resuscitation. Regarding communication as made up of skills maps neatly onto the idea that the work of communication can be broken down into discrete tasks (von Fragstein et al., 2008), such as gathering information or negotiating. The tangibility of the concept of skill leads naturally to

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The work of communication skills

The Work of Clinical Communication in Cancer Care

the view that effective deployment of communication skills ‘builds’ the clinical relationship (Brunett et al., 2001; von Fragstein et al., 2008). The skills metaphor fits neatly into institutional quality control procedures, too. Practitioners’ attendance at training can be documented and their skills can be measured, thereby demonstrating the institution’s performance. However, despite its familiarity, the concept of communication as skill is problematic. First, communication cannot be broken into skills and tasks as plausibly as can other clinical skills. Whereas a surgical operation could be divided into discrete skilful tasks that involve different behaviours occurring at different times, from incision to suturing, we have seen that a single element of communication has to meet many different functions. A particularly influential and enduring distinction within communication skill research and training is between practical, medical tasks and emotional tasks in the clinical encounter (Roter and Hall, 1989). Practitioners are taught that attending to the emotional and social components of patients’ presentation (for example, noticing cues to psychological problems and prompting discussion of them), and not exclusively focusing on practical medical issues, underlies the building of an emotional relationship with the patient. However, in practice, patients can perceive emotional meaning in practitioners’ instrumental actions (Roter and Hall, 1989). In the context of cancer care, a strong sense of emotional relationship can be based on perceiving the doctor as expert in practical medical skills (Wright et al., 2004). That is, the emotional quality of the relationship resides in the practitioner’s authority and commitment to treat the cancer (Salmon and Young, 2005). A second difficulty with the concept of communication as skill is that patients are greatly concerned with the individual character of their practitioners; that is, they want to feel that their practitioners are people who genuinely care (Epstein, 2006; Wright et al., 2004). However, designating communication as a skill separates what is being communicated from the individual’s core character. For example, terms such as ‘political skills’ or ‘mechanical skills’ are familiar and acceptable because politics and mending cars are not regarded as core to people’s character. By contrast, ‘loving skills’ or ‘moral skills’ are unfamiliar and unacceptable terms because love and morality are assumed to be part of an individual’s true nature. Therefore, the training of skills in appearing empathic or caring to patients is potentially inimical to the authenticity that patients—and practitioners—seek (Wear and Varley, 2008). Moreover, the necessarily generic concept of skill is hard to reconcile with patients’ concern to see their practitioners as individuals (Wright et al., 2004).

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Finally, the central problem with the concept of communication as skill was described by Plum three decades ago: applying the concept of ‘skilfulness’ to discrete communication behaviours neglects the importance of meaning in communication (Plum, 1981). Meaning is, of course, subjectively and individually defined, and what the patient hears depends not just on what the practitioner said but on what the patient feels about that practitioner, on the patient’s subjective and social context and on the immediate context of what has been said before in the consultation. A surgeon who responded to a patient’s questions about prognosis of her breast cancer by telling her to ‘leave things in the hand of God’ stepped well beyond expert ideas of skilfulness but, for that surgeon with that patient at that time and at that stage in the consultation, it was helpful (Wright et al., 2004). Therefore, while the concept of skilfulness leads naturally to judgement of quality of communication by expert coding schemes, these might not correspond to what patients value (Duffy et al., 2004; Lewin et al., 2001; Schirmer et al., 2005). Indeed, patients’ views can diverge from experts’ (Wright et al., 2004) and communication that displays improved ‘skills’ does not necessarily help patients (Hulsman et al., 2002). Priorities for communication skills: patient-centredness and empowerment Communication skill is the vehicle for what is communicated, and skill training is therefore widely seen as the vehicle for improving communication. The content for this vehicle reflects two further, interrelated ideas that, despite considerable theoretical and empirical problems, have become very influential in the broader field of clinical communication and therefore influence what communication researchers study and what educators teach (von Fragstein et al., 2008). ‘Patientcentredness’ emphasises practitioners’ concern with patients’ personal and emotional experience in the context of physical care (Stewart et al., 1995). While the elements of patient-centred communication have been codified (Stewart, 2001), the concept is conceptually and empirically ambiguous (de Haes and Koedoot, 2003; Epstein et al., 2005) and is implemented in diverse ways in practice. In cancer care, a particularly influential manifestation is in the emphasis in education and research on practitioners’ recognition of, and readiness to promote discussion about, patients’ emotional and personal experience—that is, ‘care’ rather than ‘cure’ (Ford et al., 1996; Ong et al., 2000). The second major influence on communication teaching is ‘patient empowerment’. This concept has had different meanings, as Bella

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The Work of Clinical Communication in Cancer Care

(Chapter 2) describes. In the context of clinical communication (Salmon and Hall, 2003), as in health care more generally (Veinot, Chapter 3, this volume), it has meant a process whereby practitioners help patients to deliver officially sanctioned goals (see, for example, Gingras and Aphramor, Chapter 6), particularly in accepting responsibility for health and health care. Practitioners are therefore expected to provide patients with the information that they seek so as to enable their full participation as ‘partners’ in decision-making. This, also, is manifest in diverse ways across cancer care, particularly in the emphasis on ensuring that patients are informed and in approaches to helping them take responsibility for treatment decisions (O’Brien et al., 2009). These ideas are often promoted as implementing ethical principles. The holistic breadth of patient-centredness extends the practitioner’s duty of beneficence to patients’ emotional feelings and social circumstances as well as their clinical state. Empowerment gains credibility as a way of respecting patients’ autonomy against the historical background of medical paternalism as Salander and Moynihan describe in Chapter 8. However, the rhetorical power of the moral language with which these principles are described belies ethical complexity. Emphasising practitioners’ obligation to attend to patients’ psychosocial concerns does not necessarily implement beneficence. It risks maleficence in extending professional scrutiny and control to normally private areas of patients’ experience (Salmon and Hall, 2003). Similarly, supporting empowerment by appeal to an individualist view of patient autonomy disregards the importance of the ‘healing context’ (Salander and Moynihan, Chapter 8) and neglects views in ethical theory that regard autonomy as relational rather than individual (Entwistle and Watt, 2006; Tauber, 2003). Advocates of the importance of patient-centred and empowering communication do often support their case with evidence. The problem with much of this evidence is, however, that the research methods employed embody the assumptions that the findings are then used to support. For example, while doctors who are more patient-centred sometimes command greater patient satisfaction (Stewart et al., 2007), choosing satisfaction as an outcome measure makes the assumption that, out of all the possible functions of the consultation, such as ensuring appropriate clinical care, correcting mistaken beliefs or preparing the patient for accepting poor prognosis, this is what matters most. That is, choosing this outcome builds into the research the assumption that the consumerist model that is being evaluated is valid. In cancer research, doctors’ patient-centredness has even been associated with lower

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satisfaction (Ong et al., 2000). In non-cancer research, one study associated it with poorer clinical outcomes (Kinmonth et al., 1998). Similarly, survey evidence in which most patients say that they want to be fully informed and involved (Jenkins et al., 2001; Meredith et al., 1996) is used to support the case for providing ‘empowering’ information, despite the evidence, considered above, that in practice patients’ desire for information is heavily constrained. The simplest explanation for the unanimity of this survey evidence lies not in patients’ preferences about information but in the linguistic idioms that preclude a negative response to items such as ‘I want enough time to discuss everything that is important’ (Rankin et al., 2000; Skelton, 2001). Even so, neither principle finds unambiguous empirical support. In research from clinical fields other than cancer, patients have valued doctors’ concern with psychosocial factors less than experts might expect (Ogden et al., 2002; Wells et al., 2004) and, in cancer consultations, psychosocial focus at the wrong time can be intrusive or damaging (Graugaard and Finset, 2000). Similarly, the desire for informed choice is rare in patients’ own accounts and, although many value information, there is little evidence that this is to help make choices (Hack et al., 1994; Henman et al., 2002; Sutherland et al., 1989). Moreover, in the ways that they are implemented in cancer care, both patient-centredness and patient empowerment contain contradictions that their proponents rarely confront. For example, as long as practitioners are exhorted, in the effort to be ‘patient-centred’, to increase their attention to psychological cues and to increase the proportion of dialogue that concerns psychological matters (Ford et al., 1996), the logical implication is that all dialogue should be psychological, which no one would advocate. Similarly, telling practitioners that most cancer patients want all available information (Jefford and Tattersall, 2002) is problematic because information is an infinite concept, and expecting them to take responsibility and exercise choice defies the dependence that underlies clinical relationships (Salander and Moynihan, Chapter 8, this volume; Salmon and Young, 2009). It seems, therefore, that the pre-eminence of the principles of communication skill, patient-centredness and empowerment in health care policy and educational practice, particularly in cancer care, does not reflect the empirical, moral or logical strength of their claim to represent patients’ interests. They do, though, serve interests of groups other than patients. The metaphor of communication as skill supports a large and growing body of educators and educational researchers in clinical communication (Brunett et al., 2001; von Fragstein et al., 2008).

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The Work of Clinical Communication in Cancer Care

Patient-centredness provides leverage in medical education and practice for psychologically minded practitioners and researchers. The discourse and technology around empowerment similarly support the organisations and researchers who measure customer satisfaction in health care or who develop new ways to deliver information to patients or to guide their decision-making. There is also a political and cultural context. Patient-centredness and empowerment align educators and researchers with politically dominant ideas of self-responsibility, individualism and consumerism whereby patients take on the responsibility and work entailed in maintaining their health and managing their illness (Brown, 2008; Salmon and Hall, 2003). It is also possible to see the enterprise of communication training as playing out broader cultural and political currents that challenge medical professionalism and promote its proletarianisation, whereby practitioners lose autonomy in the face of external control and become managed within bureaucratically organised work arrangements. So their communication work changes from that of the artisan—original and shaped uniquely by each practitioner-client pair—to that of the employee who performs technical tasks under external direction. In the era of evidence-based medicine in oncology, whereby clinical management decisions reflect evidence-based guidelines (Broom et al., 2009), the conduct of communication in consultation presents arguably the final area of relatively autonomous practice. Indeed historically, doctors have described their communication with patients as the essence of their work, and as often more important than technical expertise (Balint, 1965). The divergence between communication work in practice and communication skills There is, therefore, considerable divergence between the way that communication happens in practice and the way that it is conceptualised in training and assessment of practitioners. The two perspectives indicate two starkly different kinds of work. The intricate work in which practitioners collaborate with their patients in consultation does not allow description in terms of simple procedural rules. The creative work in which individual practitioners collaborate with individual patients to craft original solutions to individual clinical problems recognises that no two consultations are ever exactly the same, and cannot be described by procedural rules. By contrast, the communication work that is described in health policy and education is the operation of a procedural technology, around which further supportive technologies of

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education and assessment have been built. It is the work of the employee with the emphasis on procedures rather than creativity. Arguably, it threatens to de-humanise care by disrupting practitioners’ crafting of individual relationships for and with individual patients. This divergence causes problems. Most importantly, patients lose out. The work of an autonomous artisan can be ugly, crude or dysfunctional just as it can be elegant, sophisticated and carefully tailored. Correspondingly, communication that is left to intuitive practitioners can be hurtful or damaging just as it can be reassuring or therapeutic. Conversely, communication that is rule-governed can thwart the needs of individual patients (Ingelfinger, 1980). Therefore, this analysis should not be read as an argument for a return to medical paternalism, whereby practitioners were licensed to communicate in ways that reflected ignorance of evidence about communication processes and patient needs. Similarly, it is not an argument that communication should not be taught or assessed. It is an argument, instead, for developing a productive way to reconcile clinical and educational practice. However, there are reasons to fear that the tension that this chapter has described does not contain within it the capacity to produce the new model of communication that is needed. One reason is that the communication skills enterprise is already changing what it means to be a patient or a practitioner. Plum (1981) described communication training as potentially coercive of the recipients of communication in imposing experts’ assumptions about their role. In the clinical context, the communication skills enterprise is, arguably, helping to mould the patient to the requirements of the consumerist and individualist age as it presents them with the expectation that they should absorb or request information and take responsibility for decisions (Brown, 2008). It can change practitioners, too. Plum warned also that dividing communication into ‘right’ and ‘wrong’ ways encourages communicators to distrust their own personal experiences and resources. There is a second reason to doubt that the tension between communication in practice and communication as employee skills will be productive. The attempt to control a traditionally autonomous aspect of professionals’ roles should be expected to create reactance. Educators and researchers routinely point to the inadequacy of practitioners’ communication—or their continued need for training, which amounts to the same thing (Fallowfield and Jenkins, 2006). Understandably, practitioners rarely go into print to contradict this view publicly. However, informally and privately, practitioners have voiced disenchantment or resentment at what one doctor termed the ‘communication skills gestapo’ in discussion of

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Peter Salmon

The Work of Clinical Communication in Cancer Care

the author’s presentation in a seminar of some of the ideas and evidence in this chapter. The opposite side of this adversarial climate is illustrated by a reaction from a key proponent of communication skills training to a similar presentation, who described feeling ‘vilified’ by it. Online responses to a paper that, on the basis of interviews with patients, challenged some assumptions of current communication skills training (Wright et al., 2004), further illustrate the intensity of feeling.

Elements of a new model for clinical communication So the tension between current policy and educational practice on the one hand, and the reality of communication in consultations on the other, does not seem to be a productive dialectic from which a new model of clinical communication will naturally emerge. We therefore need to start shaping a model with which both educators and clinicians can engage. This will need to incorporate three key principles that the current technology of communication skills does not. Indeterminism in the effects of communication Communication skills theory has adopted a reductionist and determinist approach that is influenced by the quantitative methodological background of many of the key researchers. That is: communication is composed of components that are specifiable in terms of practitioner behaviour; research can show which components have value; then it is up to educators to promote those components in practice so as to improve care. The message of this chapter is that this view is untenable. There is rarely a single intended outcome for any piece of communication, and communication behaviour that is inappropriate with regard to one outcome (for example, because it distresses the patient) might be appropriate with regard to another (for example, because it challenges denial that is preventing potentially curative treatment). Moreover, it is doubtful that the intended outcomes of any single utterance by a practitioner can ever be known. Outcomes will exist locally and transiently in the dialogue (Hulsman, 2009), and may not even be consciously known to either party. Moreover, even were outcomes to be clear, it would rarely be possible to determine whether an utterance was appropriate. First, its meaning lies not in the behaviour itself, but in the way that it is understood by the specific patient in a specific context (Plum, 1981), and this can rarely be known or assumed. Second, given that every clinical situation is unique, just as no relationship between any two individuals is exactly like any other, creativity should be the norm. Therefore, as

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their starting point, educators need to replace a determinist view by indeterminism—we cannot normally be sure whether any element of a practitioner’s communication was appropriate or not.

It follows that judging the quality of a practitioner’s communication is fraught. Conventionally, researchers who want to demonstrate quality of communication choose an outcome and test whether it is associated with the elements of communication hypothesised to improve communication, such as statements of empathy or use of open rather than closed questions. Because most communication has multiple outcomes, this is problematic. For instance, if the outcome is satisfaction, communication should presumably not be evaluated according to whether it delivers this at any cost to the patient’s clinical care or knowledge of what is wrong. Where outcomes are too confusing or too difficult to evaluate, quality of communication is typically judged according to the frequency of certain components of communication. This also builds in absurd assumptions, which communication skill educators would themselves reject when taken to their logical limits. For example, where evidence that training doctors increases their empathy is used to claim success for the training (Bonvicini et al., 2009), this implies that the best communication would be exclusively empathic to the exclusion of clinical management. Many quality assessment instruments do not quantify behaviour directly, but rely on expert raters to judge the appropriateness of specific aspects of communication and quantify these. However, this is arguably also invalid because it neglects the individuality and meaning of communication (Plum, 1981; Salmon and Young, 2009). Reductionist quantification is the natural approach to assessing quality of employees’ work—numbers of patients seen, students taught or papers published. However, although we are comfortable with judging the quality of the work of an artisan, we do not assume that we can first reduce it to quantifiable constituent elements and then assess those individually. For example, the quality of an artisan-made piece of furniture would not be assessed by first rating the legs, then the top, then the inlay, finish and so on, before summing these items to provide a complete judgement. In clinical consultation, it is likely that there are some communication behaviours that are so damaging that they prevent patients from forming the necessary clinical relationship and that practitioners or students displaying these need to be identified and their behaviour addressed (Salmon and Young, 2009). Beyond

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The uncertainty of quality

The Work of Clinical Communication in Cancer Care

this, however, it is very difficult to envisage formal judgements than can do justice to the individuality and meaning of each situation. We may therefore need to learn from approaches to the judgement of quality in non-scientific areas of human behaviour. In arts and philosophy, judgements of quality are routinely made. While it may not be possible to be precise and quantitative, they can be, arguably, be objective and valid (Barrow, 2006).

The value in practitioners’ communication While practitioners have something to learn from educators and researchers, the latter, in turn, have much more to learn than is generally acknowledged from practitioners’ attempts to negotiate solutions to the dilemmas of clinical communication in practice (Kleinman, 1999). As an evidence base for future communication education, we will need more research that examines communication inductively so as to identify new insights from clinical interactions and, arguably, less deductive research that examines communication through the prism of expert assumptions and concepts. The educational enterprise will correspondingly need to increase the emphasis on the expertise that practitioners bring. In current educational practice, especially when learners are experienced practitioners, educators do, of course, already draw on this experience. However, the concept of communication as skills consigns this to a peripheral position in the literature and policy that supports the enterprise. How these principles can be addressed in a way that does not become another repressive technology is not yet clear. However, in the broader field of clinical communication research and education there are some developments that point to new approaches. Epstein has suggested mindfulness (learning to attend critically but not judgmentally to one’s own mental processes when with patients) as a route to foster compassionate communication (Epstein, 1999; Zoppi and Epstein, 2002). Some have suggested ‘deep acting’, whereby practitioners use their ability to imagine patients’ experience to guide their emotional reactions so that communication behaviour changes in consequence (Finestone and Conter, 1994; Larson and Yao, 2005). In turn, others have suggested enhancing awareness of patients’ experience by immersion in patient narratives or even by being hospitalised like a patient (Wear and Varley, 2008; Wilkes et al., 2002). It will be important not to neglect behavioural techniques, though. Practitioners readily learn from each other, acquiring and refining communication techniques that they have observed in

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training or in practice. But to call these skills, with the implication of universal desirability, is to promote them too far. The artisan fashioning a piece of furniture may acquire new tools, or new techniques of cutting or carving, but would not be deluded into thinking that merely deploying these guarantees a high quality product. The artisan’s responsibility to deliver quality is better reflected in the metaphor of selecting from a toolbox, or from accumulated hints and tips (Plum, 1981), than the metaphor of deploying skills. According to this metaphor, the appropriateness of what the artisan does will not reside intrinsically in the tools or techniques that are used, but will lie in what s/he is trying to achieve and in the extent to which others recognise its value.

Conclusion The analysis in this chapter provides only preliminary pointers to a new model of educational delivery. There is much work still to do. Moreover, it will be important to remain aware of the way that new technologies that follow new understanding can themselves become constraining or repressive (Farson, 1978). In the face of national and international efforts to standardise models of good communication and the aims and methods of communication training, we need to take what useful tools and techniques that body of work has to offer, but use them in ways that emphasise experimentation and originality. We shall also need to look beyond the scientific frameworks that currently shape the education and evaluation of clinical communication, and see what can be learned from other fields, particularly in the arts, in which education and evaluation sit comfortably with creativity.

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Peter Salmon

Working for the Cure: Challenging Pink Ribbon Activism Maya Goldenberg

A promotional pamphlet describing a weekend-long fundraising event that auspiciously works to end breast cancer features the image of a woman, bathed in sunlight, standing defiantly with arms stretched above her head. The pose is familiar to the post-cancer crowd—the top half of the warrior pose or a sun salutation—yoga positions that symbolise strength, preparedness and openness. Because the woman’s head is wrapped tightly in a bandana, we take her to be a survivor. Because she is young, strong, healthy and hopeful, she represents the ‘survivor-thriver’ so frequently celebrated in the mass media. This image captures the ethos of pink ribbon activism—a compelling message of health, hope and cure that frames breast cancer discourse. Breast cancer campaigns are a thriving form of health consumer activism in Canada and the US. This is indeed due to high incidences of breast cancer in these countries,1 but also due to its high marketability as a women’s issue, a community-builder, a forum for corporate responsibility and an affirmation of the social good that biomedical research offers. While feminist, corporate and biomedical interests have often been antagonistic, the breast cancer movement in its current formation brings these interests together in a shared goal of curing a serious and life-threatening disease. This historically unlikely alliance deserves investigation and evaluation. Captured and branded in the highly recognisable image of the pink ribbon, the politics of breast cancer at the start of the twenty-first century is markedly hopeful (given the grim statistics) and surprisingly compliant with the medical establishment’s defined health goals and approaches to addressing the breast cancer epidemic. This chapter examines and evaluates how the pink ribbon message has shaped and organised social response to breast cancer. The work in question is 140

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‘healthwork’, a term found in the critical health literature denoting the active and purposeful work that people do to look after their health (Mykhalovskiy and McCoy, 2002). Healthwork analysis tends to focus on personal care practices such as taking medicines, dealing with health care practitioners, informal caregiving and health information seeking, that are then subject to examination of how those individual actions invite extended relations of governance and ruling (Mykhalovskiy et al., 2004). In this examination of breast cancer campaigns, the same analytic concern with governance is taken, but the health-related work is extended beyond personal care and self-surveillance to include the volunteer work done by many concerned citizens in their contributions of time, energy and money to support campaigns for the cure. I argue that while the appropriation of the language and themes of the early women’s health movement frames pink ribbon activism as a highly personal, emancipatory and socially responsible individual effort, this brand of breast cancer activism instead serves to fund a limited biomedical research agenda that is largely shielded from public scrutiny. This agenda has been universalised through endearing ‘hero’ narratives of personal struggle that inspire civic engagement by complicit consumers rather than critical activists. Pink ribbon activism problematically diverges from the demand made by the women’s health movement for participation in setting the research agenda and determining treatment strategies. This neglect is troubling, given that breast cancer discourse is so fraught with contested knowledge claims regarding disease aetiology, prevention and treatment. While the pink ribbon message offers hope and optimism, it does so by suppressing many counterclaims, disputes and ambiguities surrounding the problem of breast cancer. Instead of soft ‘pink’, a more critical social response to breast cancer is needed in order to ensure women’s informed participation in addressing this serious challenge to women’s health.

Comparing pink ribbon activism and the goals of the women’s health movement Women’s community health activism, including breast health education, public awareness, fundraising, pink purchasing and athletic events that fall under the rubric of ‘pink ribbon activism’, has its historical origins in the US-born women’s health movement. Therefore, I begin this examination with a look at the movement’s programmatic aims and goals and compare them to the current practices and objectives of pink ribbon campaign efforts.

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go beyond the traditional confines of medicine and medical issues to examine how various social, institutional, political, and economic arrangements influence women’s health. For instance, domestic violence, labour practices, social assistance, and international development policies have been examined from a women’s health perspective. (Goldenberg, 2007, p. 440) These studies have enlarged the epidemiological scope of the sources of poor health to indict globalisation, ill-conceived development policies and poverty as major hindrances to women’s health around the world. Pink ribbon activism, in contrast, supports the medical model, often fundraising for biomedical cancer research and treatment centres. While women’s health activism need not be adversarial towards the medical orthodoxy, feminist efforts have historically pushed against the mainstream and challenged conventional thinking in ways not found in the pink ribbon message. The broad aim of the women’s health movement was, in its grassroots beginnings, and still arguably is, to reclaim women’s bodies from the oppressive institutions of medicine and to reframe women’s knowledge and experiences of their bodies in ways not configured by sexism and androcentrism. Early breast cancer activism challenged many of the conventional prophylactic practices. In the 1970s and 1980s, for instance, feminist activists successfully campaigned against the most disfiguring form of breast cancer surgery, the Halsted radical mastectomy, which removed breast tissue, nearby lymph nodes and chest wall muscle, leaving women permanently disabled (King, 2006b). The women’s health movement also put an end to the common surgical practice of proceeding directly from biopsy to mastectomy without ever rousing the patient from anaesthesia (Ehrenreich, 2001). Feminist groups also demonstrated the ineffectiveness of high dose chemotherapy, where bone marrow was removed prior to otherwise lethal doses of chemotherapy and later replaced (Ehrenreich, 2001). Women’s health activists also influenced the research agenda, demanding answers to questions that women were asking. For example, was the breast-conserving lumpectomy comparably efficacious to the mastectomy? It was also the strong lobbying efforts

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The surprising feature of current breast cancer activism and community-based campaigns for the cure is that the women’s health movement has traditionally challenged biomedical approaches. Women’s health is widely understood to:

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of women’s health organisations in the early 1990s that successfully achieved government and health research organisations’ recognition of breast cancer as a research priority, with a corresponding increase in research funding in response (Lerner, 2006). These combined efforts by women’s health activists shifted some of the patriarchal norms surrounding breast cancer treatment. The movement’s aims were not merely to change medical practices but to empower women as participants in their health care decisionmaking (see Bella, Chapter 2). The Boston Women’s Health Book Collective produced the groundbreaking publication Our Bodies, Ourselves in 1973 (Boston Women’s Health Book Collective, 1973) towards this end. Now with dozens of translated, updated and age- and diseasespecific editions, this important text offers knowledge not available elsewhere in easily accessible language. By valuing women’s self- and embodied-knowledge, the movement legitimated self-help efforts, sharing of stories and mutual support networks that now figure so prominently in breast cancer discourses. Indeed, feminism helped make the breast cancer sisterhood possible. Some have remarked that the women’s health movement may be a victim of its own success. The medical mainstream has largely acknowledged the importance of women’s health. Against its adversarial beginnings as a contested category in medical nomenclature, women’s health is now easily thought of as a medical specialty like any other. Women’s health is now largely negotiated from within the institutional structures rather than from without. For instance, the Canadian Institutes of Health Research now includes the Institute of Gender and Health. Likewise, the US National Institutes of Health has an Office for Research on Women. These offices work to counter gender discrimination in medical research and practice, such as the over-representation of male trial subjects in clinical trials. This problem persists despite declarations made by medical associations encouraging change to this practice and various corrective policies having been put in place (Marshall, 2005). While effective in many ways, this professionalised and insider position for women’s health activism dilutes some of the movement’s original political aims and runs the risk of returning women’s health research to biological and reductionist paradigms. The ‘mainstreaming’ of women’s health has also been noticed by corporations looking to increase their female consumer base. Women’s health has become a widely profitable market, as seen by the astounding array of health, nutrition and wellness products and regimes aimed at women. Critics of consumer culture will question whether direct

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Maya Goldenberg

Working for the Cure

health marketing to women constructs complicit consumers rather than empowering women through information, choice and quality goods and services. But this message may not be heard, as the original spirit of self-help and self-knowledge that once inspired covert cervical selfexaminations using plastic speculums, mirrors and flashlights has been commandeered by health marketers. We see this in the incredible marketability of the breast cancer cause, discussed later in this chapter. The current state of breast cancer consumer activism limits the focus on activism—the efforts to change standards and practices in the delivery of goods and services—and instead places emphasis on consumption. There exists an impressive and widely available market of breast cancer products emblazoned with the ubiquitous pink ribbon logo. Far more than a simple T-shirt and teddy bear campaign, breast cancer awareness products include pink running shoes, socks, outerwear, underwear, jewellery, hats, scarves, pins, food products, cookbooks, cosmetics, small appliances, children’s toys, home décor items, gardening tools, stamps, stationary, envelopes, computer mouse pads, bank cheques, credit cards, license plates and more. There are scores of consumer products that feature limited-edition pink versions with partial proceeds from the sales going towards ‘breast cancer research’. The marketing of breast cancer products is done with such sophistication that breast cancer campaigning seems to be an industry in itself, captured in the clever term, ‘Pink Ribbon, Inc.’ used by Samantha King (2006b). Barbara Ehrenreich (2001) similarly referred to this phenomenon as ‘the cult of pink kitsch’. These items increase in appearance and availability during the month of October, Breast Cancer Awareness Month in many countries. Numerous five kilometre charity runs and other community-based athletic activities typically take place. They prove to be so popular that ‘run for the cure’ is now a misnomer. The downtown streets of many towns and cities are so jammed with cheerful participants, dogs and strollers that one can typically do no more than stroll for the cure. These community events are not traditional activist demonstrations, as participants walk, talk and laugh, rather than shout slogans and wave placards. Nonetheless, these public gatherings still valuably exhibit a feminist commitment to redefining the meaning of illness. Gone is the shame of breast cancer. When thousands of people take to the streets to run, walk or march in solidarity, the previous silence around breast cancer is broken. What was once euphemised in women’s obituaries as ‘the long illness’ (Ehrenreich, 2001) is now a mobilising cause for community and celebration. Rather than suffer in silence, survivors now

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wear distinct pink shirts at cure campaign events (King, 2006a). Breast cancer has come a long way to being the ‘biggest disease on the cultural map’ (Ehrenreich, 2001). Beating drums, blowing whistles, wearing costumes, singing and chanting in unison, the participants walking and running along city streets also endorse a message of ‘healthy mind, healthy body’. Stress, poor diet, negative thinking and lack of exercise are widely thought to cause cancer. Laughter, positive thinking and exercise are presumably the antidote.2 In this age of information access, the ‘consciousness raising’ awareness piece of feminist health activism seems to have been distilled down to a message of ‘eat your vegetables, exercise, don’t smoke, and get an annual mammogram’.

Every illness needs a story: the hero narrative and what remains untold While the campaigns for the cure are galvanised by grim statistics,3 the events are framed as celebrations of courage and survival. Even the sombre moments, such as candle-lit vigils commemorating those who ‘lost the battle’, are framed in optimistic hopes for the future: learn from our sisters and screen! Raise funds! Join the fight! The wide appeal of the pink ribbon message in fact relies on its linkage to the personal struggles of brave women. These messages, however, are problematic in their encouragement of complacency with respect to disease occurrences and available response strategies. While the illness narrative sub-genre importantly allows marginalised voices to be heard, and helps many find meaning and comfort in times of existential crisis, contemporary breast cancer memoirs have become formulaic scripts celebrating the hero/survivor (‘the hero narrative’). Their repetition becomes coercive as heroics emerge as the preferred paradigm for understanding the experience of breast cancer and anti-hero counterdiscourses are marginalised and silenced. The breast cancer narrative is part of the important feminist practice of ‘giving women voice’ in previously inaccessible venues and forums. The tradition of breast cancer narrative started with the important works of Betty Rollin’s First You Cry (1976) and Audre Lorde’s Cancer Journals (1980) which both provided a much needed counterdiscourse to the biomedical discourses that were available at the time. These deeply personal insights offered thick description, from a woman’s point of view, thus broadening the breast cancer story to include the personal, interpersonal, existential and economic hardships endured by women with cancer.

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Maya Goldenberg

Working for the Cure

When Lorde was rebuked by a nurse for not wearing a prosthesis in place of her missing breast, she reports being ‘too outraged to speak then’ (Lorde, 1980). Here she learned the harm of silence and then framed the problem of being seriously ill as a problem of finding voice. She wrote, ‘I was going to die, if not sooner then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you’ (Lorde, 1980, p. 20). With the commitment to ‘breaking the silence’4 also comes the responsibility on the part of the storyteller: ‘to witness the memory of what happened, and to set this memory right by providing a better example for others to follow’ (Frank, 1995, p. 133). Lorde’s moral responsibility stemmed from her prior activism and particularised politics of self. ‘Because I am woman, because I am black, because I am a lesbian, because I am myself, a black woman warrior poet doing my work, I come to ask you, are you doing yours?’ (Lorde, 1980, p. 21). Here we find an early rallying call for mobilising community among women around illness. Breast cancer survivor stories have since become numerous. Women have stories to tell about the challenges and lessons learned from the breast cancer experience. One can find a myriad of blogs and blog entries recounting the breast cancer experience and dozens of books offering detailed personal narratives (see Segal, 2007). It is now common and even expected practice for celebrities to publicly share their breast cancer experiences, and these stories are generally thought to inspire, comfort and console other women similarly enduring the challenges of breast cancer. In her cultural analysis of the cancer experience, Jackie Stacey (1997) outlines the conventional trajectory of the breast cancer narrative. The story is one of ‘triumph over tragedy’, where ‘pitting life against death and drawing on all possible resources, the patient moves from victim to survivor and “triumphs over tragedy” that has unexpectedly threatened their life’ (Stacey, 1997, p. 1). The story begins with the discovered lump or suspicious mammogram; the suspense while waiting for biopsy results; the diagnosis; the despair; the bumps along the road to recovery; the difficult treatment and side effects; the relief when it ended; the story concludes with the available closures like hair growing back, returning to work, and crossing the 2-year threshold (Stacey, 1997). The hero’s successful struggle is often a story of transformation in which misfortune becomes a positive source of self-knowledge. The protagonist benefits from new-found wisdom:

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Accepting the fragility of life itself, the cancer survivor sees things others are not brave enough to face (or so the story goes). Cancer offers the chance to reassess. It allows the person to pause and to reevaluate their life: having cancer teaches us that life may be shorter than we thought and that it may be time to decide to live it differently. These are the kinds of wisdoms which are told and retold in books about cancer. (Stacey, 1997, p. 1) If, Stacey continues, the person with cancer dies, the story will be one of great loss and suffering, but will also celebrate her courage and dignity. Often written by friends or family of the deceased, these stories will recount pointlessly shortened lives and lost opportunities, and warn others to avoid similar fate. But those stories are ‘rarely disaster stories, and one typically finds heroism in the tragedy, stoicism and a fighting spirit. They document the triumphs along the way, even in the event of death’ (Stacey, 1997, p. 2). The hero narrative has normative implications for those trying to find meaning and/or their own voices within the cancer experience. Segal’s (2007) analysis of public rebuke of anti-hero breast cancer narratives demonstrates the fixed normativity of heroism within breast cancer discourse. The stories of author and social critic Barbara Ehrenreich (2001) and journalist Wendy Mesley (2006) are examples where the cancer experience makes these narrators angry and challenging rather than simply self-reflective or thankful. Ehrenreich was publicly scorned for having a ‘bad attitude’ and ‘needing therapy’, while Mesley was charged with ‘fear-mongering’. While disagreement over alternative views can be expected, these personal attacks on celebrity ‘agitators’ set tacit limits on the stories that other women are allowed to tell. Different points of view should be encouraged, as the emancipatory purpose of giving women voice is not realised when women are handed a script. Yet criticising the highly reproduced generic cancer narrative still invites some discomfort. Not only do these stories build on an important feminist activist history, but they also offer helpful resources for many women trying to come to terms with a cancer diagnosis and to live through the difficult negotiations surrounding treatment and their personal lives. Illness narratives are an important genre, as illness presents as ‘an occasion for autobiography’ (Frank, 2000) and memoirs of illness can offer therapeutic value (Kleinman, 1988) and present ‘openings to ethical ways of living’ (Frank, 2000). In trying to make sense of the ‘why me?’ of the cancer diagnosis, narrative is a helpful genre because it offers

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Maya Goldenberg

Working for the Cure

a way of ordering events, assigning roles and providing coherence to a confusing situation (Frank, 1995; Stacey, 1997; Salander and Moynihan, Chapter 8, this volume). When put under duress, people seek explanatory frameworks and willingly cling to the narratives offered to them (Frank, personal conversation, 15 April 2009). Yet that insistent need suggests that the narrative itself may get taken up without sufficient critical consideration. I join Segal (2007) and Pezzullo (2003) in suggesting that, 30 years later, breast cancer narratives themselves require a counterdiscourse. In their repetition of the formulaic ‘hero’ narratives, breast cancer narratives have become normative and can be coercive. While the early narratives were rallying cries for women and women’s health activism, the genre of breast cancer narratives that followed might have outserved its original emancipatory purpose. The narrative has become so scripted that at least two other important issues are left out. The first is the suppression of the anti-hero narrative, and the second is those features of the cancer story that betray the narrative arc. In addition to marginalising certain themes and content, the hero narrative also promotes an uncritical acceptance of biomedical discourse, as medical science and its practitioners can also be scripted with similar valour. Beginning with the former, consider that ‘stories of progress and rationality are tempting, but perpetuate the illusion of life as a steady upward learning curve in which all crises have a profound meaning’ (Stacey, 1997, p. 15). Such mythologies encourage the reader to believe that suffering makes us wiser and serve to heroise those who suffer most. In Undefeated (2006), survivor Marsha Hunt wrote: ‘Cancer’s been a wonderful experience for me . . . . One of the best experiences I’ve had’ (Hunt, 2006, quoted in Segal, 2007, p. 14). Another survivor tells us, ‘Cancer inspires me. I’ve been given a wake-up call that many people will never receive’ (Donaldson, 2007, quoted in Segal, 2007, p. 4). However, certain health imperatives accompany that critical self-accounting inspired by life-threatening disease: be strong, be grateful. The reader is challenged to be a hero, to ‘be like me’ (Herndl, 2006, quoted in Segal, 2007, p. 4). Many will embrace the hero metaphor for the comfort it provides. The hero’s cohesive storyline denies the absences and gaps in the cancer story that can come from the futility of pain, the arbitrariness of disease or the pointlessness of suffering (Stacey, 1997). By erasing potential ambiguity or lack of meaning, these stories offer the reader truths about life with illness. The hero story also offers ‘fantasies of power and control through the narrative rationalisation of progress and improvement’ (Stacey, 1997, p. 15). Against the flattened feelings of pointlessness that

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long-term illness can invoke, the suffering cancer patient can fit her understanding into a familiar structure of good triumphing over evil. And indeed, this narrative offering clearly marks a positive step. Women who are in a position to take advantage of the optimism and camaraderie of survivor culture are likely to find resources to aid in their recovery. The isolating emptiness is not a better alternative. It is because the cancer diagnosis re-scripts the life story with ‘ruthless editorial authority’ (Stacey, 1997) that the cancer narrative is so important. Illness narratives pursue such questions as: How should my life be imagined in such an unexpected context? Can the self be reinvented to cope with the shock? What kind of body hides the evidence of cancer so effectively? What kind of disease disguises itself so skilfully? (Stacey, 1997, p. 5) Unfortunately, the new image of breast cancer promoted through pink ribbon activism brings with it a slew of other problems. The cheerfulness and consumer-oriented character of breast cancer survivor culture can be enormously alienating to women who do not have the networks of social support or financial means to participate in it and it may also unintentionally denigrate those who have ‘failed’ to survive (King, 2006a). Ehrenreich (2001) has argued that through the well-intended efforts of breast cancer survivor culture, the disease has been problematically transformed into a rite of passage rather than an injustice against which we must struggle. The political consequences of this reframing of breast cancer activism will be discussed shortly. For all the benefit that the hero narrative can offer, it falters at the points where the cancer experience betrays the narrative. In his own cancer story, sociologist Arthur Frank writes, I myself am no Phoenix [rising from the ashes]. Whenever one of my own medical tests requires ‘further investigation’, the skin that covers over the memories of my first cancer bursts . . . the pain of having cancer bears down on me again with all its terrible weight. Each time I learn how close to the surface those memories remain. (Frank, 1995, p. 136) Frank (1995) recognises that metaphors, and the narratives that reproduce them, are potent ways of understanding illness, but he warns

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against the generic metaphors offered as storylines for others’ selfstories. Frank alerts us not only to the anti-hero narrative that does not get told but also of the failure of cancer ‘survival’ to fit into the narrative structure. The difficulty occurs because the hero story requires finality or closure. To be a survivor is to overcome adversity. Yet because there is no cure, the cancer story is never complete. While treatments end, and, as years go by, the chance of recurrence minimises, the former patient remains in remission—a postponement, but not finality. Frank uses the term ‘remission society’ to describe the people who are ‘effectively well but could never be considered cured’ (Frank, 1995, p. 8; see Frank, 2002). We learn from Frank that the failure of survivor stories is similar to the ineffectiveness of the Phoenix metaphor in capturing the complexity of the cancer experience: they can present the burning process as too clean and the transformation as too complete, and they can implicitly depreciate those who fail to rise out of their own ashes . . . while the phoenix remembers nothing of its former life, the victim of some trauma . . . does remember. (Frank 1995, p. 135) In the end the renewal is never complete. Survivor stories make for compelling literature: they combine the ‘masculine’ heroics of adventure narratives with the ‘feminine’ suffering and sacrifice of melodramas. They offer victims and villains, and dramatically ‘pit the hero against the disease in a life-and-death battle. The hero usually has truth, goodness and the pursuit of knowledge on his or her side’ (Stacey, 1997, p. 11). That same narrative structure of brave struggle against a sinister disease opponent5 found in the personal stories of women is reproduced in biomedical representations of the disease, thereby encouraging complacency with respect to the standards of medical practice. Indeed, Globe and Mail columnist Margaret Wente’s censure of Mesley’s anti-hero auto-documentary (2006) assailed Mesley for ‘having done cancer research a huge disservice’ (Wente, 2006) in her investigative journalism; suggesting, it seems, that personal breast cancer stories ought to support the medical model. In the biomedical accounts, scientific progress becomes the hero. Medical research will produce the cure for cancer. This is the reason people are running, walking and cycling. In this story, the heroes of medicine are the victors who can save women from the horrors of their

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bodies (see Leopold, 2000). Cancer is commonly characterised as the ‘cells in chaos’, or chromosomal ‘anarchy’ (see, for example, Angier, 1991; Duesberg, 2007). Through the progress of scientific discovery and knowledge, the fantasy of ultimate control is offered (see, for example, Janeka, 2007). With enough time and money, the public is told, the chaos will be brought under control and cures will be found (Stacey, 1997). Genomics and personalised medicine are conveyed in the media as a tantalising promise despite disappointing findings regarding the explanatory power of the human genome (Wellcome Trust, 2004) and the limited predictive basis of genes for the onset of common diseases like cancer and diabetes (Wade, 2009). The hero narrative instructs us to trust the doctors, as they know what is best for the female body that has become a battleground between good science and bad disease. We stand the best chance if we do as we are told: engage in the healthful behaviours advised by the medical experts, watch for early signs of breast cancer and report to our physicians immediately. It is worth reflecting on how the long suppressed ‘voice’ given to women tells stories where the masculine hero narrative of science plays out. Women’s embodied knowledge, argued so fiercely by the early women’s health movement to be missing from dominant health discourses about women’s diseases, serves little purpose in this story, as women’s participation is limited to side-line efforts like self-surveillance and fundraising for the large cancer foundations and hospitals.

The commercialisation of breast cancer activism: from personal responsibility to social action The encounter with breast cancer invites both personal and social struggle. In this section, I demonstrate that once action shifts from individual reflection to social action, options are largely limited to an unquestioning support of the medical model. Despite various sites of contested knowledge with respect to disease aetiology, prevention and treatment, pink ribbon campaigns marvellously organise and direct many highly motivated individuals to participate in cause-related activities and campaigns that promote decisive verdicts on how breast cancer is best addressed personally and socially. The cleansing finality and added optimism of the problematic hero narrative is magnified by corporate interest in the disease and the lucrative marketing opportunities that breast cancer offers. Businesses looking to sell more products to female consumers have been quick to latch on to changing attitudes towards breast cancer, and the pink

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ribbon industry that has emerged as a result is deeply dependent upon a positive image of the disease. Sickness and death do not sell nearly as well as images of survivors who are uniformly youthful, feminine, attractive and optimistic. Corporations are not alone in promoting an overly optimistic account of the struggle against the disease. Large non-profit cancer foundations such as the Canadian Breast Cancer Foundation, the Canadian Cancer Society and the American Cancer Society have used similar tactics in promoting the cause. King (2006a) recounts attending glamorous fundraising events featuring celebrity guests and pink-ribboned designer swag, where one could come away with the impression that breast cancer is a disease from which people no longer die. The breast cancer foundations have discovered that upbeat messages result in more devoted individual fundraisers and more generous corporate sponsors (King 2006a). But the message—‘there’s hope!’—needs to be more than reassuring; it also needs to motivate civic action. The public are told that the war against breast cancer cannot be won without community support and involvement. Many people understandably want to contribute and become involved in that captivating message of hope, cure and survival. Here the ethic of personal responsibility, described by Bella (Chapter 2) to be a wilful compliance by individuals to follow health promotion prescriptions under the guise of ‘patient empowerment’, compels many to take action. First, there is the responsibility that one can take for one’s own and one’s family’s health: ‘Eat your vegetables, don’t smoke, exercise, and get your yearly mammograms’ are regularly pitched as the formula for protection against breast cancer. The second step is community involvement, and the major breast cancer foundations provide ample opportunity for the concerned public to work towards finding the cure. Most of the health and lifestyle messages about breast cancer are not meant simply to inform, but also to evaluate and govern people (Segal, 2007). ‘Health-conscious’ lifestyle choices are preferred over others, and women ought to have children, do it while they are relatively young, and breastfeed them (Yadlon, 1997). Despite scientific studies failing to show that a low-fat diet and regular exercise can reduce cancer (Hunter et al., 1996; Kim et al., 2006; Smith-Warner et al., 2001),6 we still routinely encounter breast health diets and risk-reducing fitness plans that are endorsed by the Canadian Cancer Society and others. There is also no evidence that a positive attitude has a bearing on breast cancer occurrence and outcomes (Allegmang, 2002), and experts disagree

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about the benefits of breast self-examination (Baxter, 2001) and regular mammography on women under 50 (Ringash, 2001; for a history of mammography use and controversies, see chapter 2 of Batt, 1996).7 Despite these negative and uncertain findings, the mainstream message still champions without hesitation the benefits of positive attitude, healthy lifestyle, breast examination and mammograms.8 What these guidelines qua imperatives amount to is a message of individual responsibility. With each highly publicised media report of the latest breast health promoting activity, come the burdens and responsibilities that new-found health knowledge demands. If you have not committed to cancer-reducing activities, the cancer may be your fault. Even though we hear the stories of young, health-conscious mothers being diagnosed with breast cancer, that seems to only add some fascination to the narrative—how unfair and tragic for her as the ‘why me?’ question becomes harder to answer. But these cases have not lead to serious questioning of whether our causal account is indeed correct. If incorrect, our prevention strategies and activist efforts may be similarly misguided. The aetiology of breast cancer resides within the geneticenvironmental matrix. Most expert resources on breast cancer cite genetic inheritance as the primary cause; the heterodoxy cites environmental cause. While the current tendency to cite ‘geneticenvironmental interaction’ (NIEHS, 2007) seems to quiet this disagreement, the concept is in fact so broad in its possibilities that it does not provide decisive support for any one prevention strategy over other reasonable contenders, nor does it explain to many breast cancer patients why this happened to them. For example, the National Institute of Environmental Health Sciences (NIEHS) provides this broad claim about the cause(s) of breast cancer: Although scientists have identified many risk factors that increase a woman’s chances of developing breast cancer, they do not yet know how these risk factors work together to cause normal cells to become cancerous. Most experts agree that breast cancer is caused by a combination of genetic, hormonal and environmental factors. (NIEHS, 2007, p. 1, emphasis added) This statement indicates that the specific causes of breast cancer are still unknown. Almost every knowledge claim about breast cancer is disputed by a more than inconsequential minority view (for a review of the breast

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cancer debates, see Sherwin, 2004). Women seeking information in order to prevent breast cancer, understand why they got it, or avoid its reoccurrence will likely be surprised, if not confused, when they come across alternative views on the aetiology, prevention and treatment of breast cancer. One might expect the conflict of information to lead to frustration and disengagement, but the popularity and success of pink ribbon activities and events suggests otherwise. Without a good starting point for understanding the disease, one can easily find oneself following health and prevention recommendations blindly. This health promoting strategy is far from ideal. Furthermore, because there is always more that we could do or could have done by way of lifestyle, positive attitude or stress reduction, the potential for victim blaming (see Nettleton and Bunton, 1995; Veinot, Chapter 3) arises, whether self-inflicted or determined by others. This focus on individual responsibility for one’s health links breast cancer discourse back once again to narrative genre, as personalised stories entrench and naturalise the focus on the individual and make stories that are not individually focused harder to tell (Segal, 2007). Segal cites Ehrenreich’s (2001) and King’s (2006b) observation that many breast cancer chat groups and internet message boards discourage contributors from raising questions about environmental carcinogens, pharmaceutical company profits and what Ehrenreich called the ‘Cancer Industrial Complex’ (Segal, 2007). While gently explained and justified by the webpage-moderators as a desire to focus on healing through personal stories, these efforts exert a conservative influence on breast cancer discourse by making some stories more permissible and understandable than others (Segal, 2007). Those marginalised stories raise questions about the practices and priorities of the cancer cure industry at large and propose a shift in responsibility from individuals to governments and industry to initiate large-scale community prevention efforts. The presence of doubt and dissent can seriously compromise many organisational efforts to campaign for the cure, and thus there is at least motive to silence alternative views. Returning to the geneticenvironmental debate over what causes cancer, the campaigns for the cure and the cancer foundations that organise them are quiet on the environmental causes of breast cancer. Even though only a small (but not insubstantial) number regards breast cancer to be primarily environmental (see Eisenstein 2001; Rothman 1998; Steingraber 1998, 2000), it is generally accepted that some cancers are caused by environmental toxicants. While Marin County and other San Francisco Bay Area activists9 will strongly reject the sceptical estimate of 2 per cent

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two percent means that 10,940 people in the United States die each year from environmentally caused cancers. This is more than the number of women who die each year from hereditary breast cancer—an issue that has launched multi-million dollar research initiatives. This is more than the number of children and teenagers killed each year by firearms—an issue that is considered a matter of national shame. It is more than three times the number of nonsmokers estimated to die each year of lung cancer caused by exposure to secondhand smoke—a problem so serious it warranted sweeping changes in laws governing air quality in public spaces. (Steingraber, 2000, p. 31) Furthermore, Steingraber adds, ‘none of those 10,940 Americans will die quick painless deaths. They will be amputated, irradiated, and dosed with chemotherapy’ (Steingraber, 2000, p. 31). Despite these staggering numbers, Pezzullo has added, cancer activists continue to encounter significant obstacles when attempting to bring environmentally related carcinogens into the foreground of US public dialogue (Pezzullo, 2003). This is also the case in Canada. In the CBC documentary, ‘Chasing the Cancer Answer’, Wendy Mesley stunned a chief executive from the Canadian Cancer Society, the organisation that sponsors most national awareness and cure campaigns, by asking her why more pressure has not been put on manufacturers to keep known carcinogens out of household products or to keep those products off of the store shelves (Mesley, 2006). Caught on camera, the executive gawked awkwardly and then answered ‘I can’t answer that question’ in an uncertain voice. The American Cancer Society has been similarly criticised by environmental groups for downplaying environmental causes of cancer and not taking a stance on any environmental legislation (Pezzullo, 2003). Amidst the messages of hope and triumph, breast cancer marketing campaigns seem to erase from public consciousness the fact that incidence rates remain stubbornly high and newly diagnosed women face essentially the same treatment options that they did 40 years ago: surgery, radiation, chemotherapy. Mortality rates have been declining slightly since the early 1990s, but this offers little comfort to the nearly 25,000 Canadian women who will be diagnosed with breast cancer in 2009 (see note 1). The only recent new options for the prevention of

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(Steingraber, 2000), even this conservative number suggests the need for a shift in cancer research priorities. Sandra Steingraber has commented that if we take that minimal number to be accurate:

Working for the Cure

breast cancer are pharmaceuticals like tamoxifen, which, while thought by most to be effective in reducing the risk of breast cancer recurrence, also brings with it serious side effects including increased risk for uterine cancer, and drastic surgical interventions like prophylactic mastectomies (King, 2006a). Yet people will often point to the good work that breast cancer campaigns perform in raising ‘awareness’ and may argue that regardless of the corny accompanying messages, pink ribbon products and five kilometre runs raise large amounts of money for a good cause. But this position raises its own set of questions: What exactly are we being asked to gain awareness of? And how is the money being spent? For those campaigns and events that venture into specifics, awareness usually means preaching the benefits of early detection through mammograms. Although this approach might prompt people to discover if they already have breast cancer, this selective awareness leaves the aftermath of that diagnosis in the hands of the individual (as was the previous responsibility to fend off the disease), and ignores those tougher questions about what could have prevented this and so many other cancer incidences. These campaigns also promote ignorance regarding the limitations of mammography as a tool in the fight against breast cancer. Mammography is not a preventive technology, as its proponents often claim. It does not keep people from getting cancer and its effectiveness in reducing mortality rates by earlier detection has not been confirmed. While they may help with early detection (albeit with numerous false readings), mammograms expose sensitive breast tissue to radiation, which may, over time, cause tumours to grow (Weisman, 2000). Some researchers say the small decreases in breast cancer deaths in recent years are better explained by the widespread use of tamoxifen and other new chemotherapy treatments than by mammography (King, 2006a, 2006b). Some might argue that an institution, flawed as it may be, that gives women hope, should not be criticised. Indeed, the participants who organise, raise funds and participate in athletic events often do this with joy and pride. Testimonials from participants of the Weekend to End Breast Cancer, a nation-wide event where each participant raises a minimum of $2000 in sponsorship contributions in order to walk 60 kilometres over 2 days, frequently speak of feeling hopeful, and enjoying the community, friendship, fun and support. In a video commemorating the 2007 Edmonton Weekend, one participant fights back tears and comments, ‘you will never ever ever be prouder of yourself than you are on a day like today’. Another says, ‘you come through this

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experience with a sense of “I can do anything” ’ (Edmonton WEBC, 2008). However, when considering the time, energy and physical exertion requested of the participants in the various races for the cure, it is important to be sure that people’s goodwill is not being exploited. When further considering the large sums of money raised through that collective labour,10 the need for transparency regarding how those funds are distributed becomes evident. Public discussion is warranted over what health strategies get promoted and which get suppressed. There is a lot of fear and uncertainty surrounding breast cancer. While women surely need hope, this should not and need not come at the expense of reliable information. To suggest otherwise is paternalistic and out of sync with current norms of patient autonomy and informed decision-making (for a discussion of paternalism in health care, see Salander and Moynihan, Chapter 8, this volume). Women do not need neatly packaged messages that misinform about progress being made or provide decisive prevention and screening programmes that are contestable. What is needed is reliable information so that women can make informed decisions. The term ‘pinkwashing’ has recently been applied in the context of critiques of the commercialisation of breast cancer activism to suggest that pink-ribboned activism is ineffective. The term ‘pinkwashing’ was lifted from the environmentalism lingo, where ‘greenwashing’ refers to the phenomenon of disingenuous environmental appearances. Because of the commercial caché of ‘being green’, consumers often have difficulty discriminating between talk about being green and actual action being taken to stop environmentally destructive practices (Pezzullo, 2003). This is seen in the ironic claims made by some mining and gas companies who promote themselves as ‘green’ industries. ‘Pinkwashing’ has been used in the context of campaigns for the cure and awareness campaigns for undermining the very efforts that they purport to support. The Avon Cosmetics company, for example, sponsored the largest US breast cancer fundraising event, the Race for the Cure, for many years, while still manufacturing cosmetics containing toxic chemicals that are known or suspected carcinogens (King, 2000b). It has even been proposed that the commercialisation of the breast cancer cause has overshadowed the search for a cure (King, 2006a). The money raised by pink ribbon products comprises a tiny percentage of total funding for research, and corporations benefit from conveying an image of corporate responsibility without donating significant profits to breast cancer research. Non-mainstream breast cancer activists insist

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Working for the Cure

that many of the large pink ribbon events spend a third or more of their earnings on overhead and advertising (Leopold, 2000; Think Before You Pink, 2007). Perhaps because people are made to feel good about ethical purchasing, consumers who are genuinely concerned about breast cancer are not engaging in effective consumer activism, such as urging corporations to direct their largesse towards preventative and curative science. Breast Cancer Action, the organisation that first introduced the term ‘pinkwashing’, reminds the public that the most effective way to support the cause is to give directly to those organisations whose work they support rather than filtering it through the commercial efforts (Breast Cancer Action, 2009).

Conclusion The pink ribbon promotes a message of health and hope that is undeniably appealing but largely uncritical. By capitalising on the rhetoric of women’s health activism, the glory of survivor stories and slick marketing, it inspires many to pursue prescribed patient empowerment strategies and ‘take charge’ of their health both at the individual and community level. These individual responses are problematic in light of competing knowledge claims and open-ended demands on people’s time, energy and commitment to health. The community responses are consistently missing critical engagement with those health promoting strategies. It was no small feat that early women’s health activists created channels for participation in setting research and treatment agendas. Within the women’s movement, woman-centred care has been seen as impossible if communities of women did not have a role in defining their own health care needs and goals. This important position must be retained. Everyone wants to put an end to breast cancer, and it hardly warrants mention that running, walking and campaigning for the cure will not end breast cancer. These activities raise awareness and funds that can then be put to use. Activists must concern themselves with and involve themselves with the details and not allow ‘campaigns for the cure’ to serve corporate interests under a pink wash of corporate responsibility rather than the needs of women.

Notes 1. In 2009, an estimated 22,700 Canadian women will be diagnosed with breast cancer and 5400 will die of it (Canadian Cancer Society). In the US, it is estimated that 192,370 women will be diagnosed with and 40,170 women will die of breast cancer in 2009 (SEER).

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2. Even though medical research has not established any connection, the cultural imaginary of the ‘cancer personality’ is deeply and historically rooted (see Baines, 2008). 3. One in eight women in industrialised countries will be diagnosed in their lifetime and endure debilitating treatment (SEER; Canadian Cancer Society). Caught early, the prognosis is good, however the chance of recurrence and repeated treatment will remain high. 4. Lorde was, of course, breaking several silences. Along with telling a personal story and a woman’s story, her politics lead her to question many feminine norms (like hiding the mastectomy with prosthetic devices) placed on breast cancer patients. She also challenged the meaning of her illness—for instance, she likened her one-breastedness to tribal warriors who remove one breast in order to sharpen their use of bow and arrow in combat. 5. This structure goes against Susan Sontag’s (1978) well-known misgivings about using war metaphors in cancer narratives. 6. While the association between the incidence of breast cancer and high-fat diets has been supported in ecological and case-controlled studies, prospective studies and Smith-Warner et al.’s (2001) pooled analysis of prospective studies do not support this association. 7. A systematic review conducted by the Canadian Task Force of the trial data on mammography for women aged 40–49 with average risk of breast cancer found that ‘although the trials constitute level I evidence, at present their conflicting results, methodologic differences and, most importantly, uncertainty about the risk: benefit ratio of screening mammography preclude the assignment of a “good” or “fair” rating to the recommendations drawn from them’ (Ringash, 2001, p. 469). 8. It took 6 years after the publication of negative findings regarding breast selfexamination by the Canadian Task Force on Preventive Health Care (Baxter, 2001), and its ensuing media frenzy for the Canadian Cancer Society to adjust its guidelines regarding breast self-examination. 9. Marin County, California is an affluent geographic region with extremely high incidences of cancer. The San Francisco Bay Area has a strong breast cancer activist community that endorses the heterodox view that these regional incidence rate are due to environmental toxicants unique to the area (Klawiter, 1999). They reject the conclusions drawn by several epidemiological studies suggesting that the high rates of breast cancer stem from the socio-demographics of the region. Affluence is associated with numerous breast cancer risk factors, such as delayed childbirth and nulliparity (see Clarke et al., 2002). 10. A 14 June 2009 media release from the Princess Margaret Hospital Foundation in Toronto reports that the second annual 200 km Ride to Conquer Cancer generated $14.5 million in funds from its 3530 participants across Canada (Princess Margaret Hospital Foundation, 2009). Toronto’s fifth annual Weekend to End Breast Cancer, a 2-day 60 km walk held in September 2007, was similarly successful, with 5521 walkers raising $17.3 million in funds to benefit research and patient care at Princess Margaret Hospital (Princess Margaret Hospital Foundation, 2007).

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Maya Goldenberg

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Part IV

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Impatient on the Net: Exploring the Genres of Internet Use for Health Maria Bakardjieva

The growing appetite of Canadians for health information online has been reported in a series of studies showing that the number of households using the internet for that purpose had grown by 262 per cent between 1998 and 2002 (Earl, 2004; Hirji, 2004; Sanders, 2008). Indeed, according to Statistics Canada (2008), of the estimated 15 million Canadians who used the internet from home in 2005, 58 per cent had, at some point, searched online for health information. Given the prevalence of health as an internet search topic, in this chapter I examine the phenomenon at the level of everyday life, to investigate and classify the diverse situations and motives reflected in the concrete instances in which users make decisions about what kind of health information is important for them and instruct their search engines accordingly. Earlier work has interpreted patients’ eagerness to employ the internet in dealing with health issues as a shift from the ‘sick role’ (Parsons, 1951) to that of ‘expert patient’, a controversial term coined in British health policy discourse (Fox et al., 2005; Hardey, 1999, 2001; Shaw and Baker, 2004). The questions I explore here include whether the extent to which the expert patient envisioned in such discourses and the person who chases after keywords across a plethora of medical websites are the same or related characters. Does the growing presence of the internet in homes spur the rise of patient medical expertise? Or, does the rising number of people who state that they use the medium to learn more about health and treatment conceal a more complicated picture of motivations and levels of engagement with medical knowledge? To differentiate among the various practices and outcomes that constitute lay use of the internet for health information, I use the 163

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conceptual framework introduced by Alfred Schutz in his essay ‘The Well Informed Citizen’ (1964) as an entry point. In this work, intended as an inquiry into the sociology of knowledge, Schutz proposed three ideal social types distinguished on the basis of their relation to institutionalised expertise: the man on the street, the expert and the well-informed citizen. With the help of these concepts, I investigate the ways in which medical knowledge is domesticated, elaborate a taxonomy of health information seekers and discuss the changing relationships between lay and expert actors in the sphere of medicine and health care.

Internet use at home The analysis reported in this chapter is based on a qualitative study conducted in the city of Calgary, Canada between 2002 and 2004 involving in-depth interviews with 192 home-based internet users in 74 households with diverse socio-demographic characteristics. The interviews included questions about various aspects of respondents’ internet use at home, including a series of prompts targeting health-related uses. The semi-structured format of the interviews allowed participants to expound on the ways in which the internet was implicated in their pursuit of information and understanding in areas related to their own and their family members’ health. The data gathered during these interviews provide the opportunity to explore internet users’ relationships with medical information and the health care system as they emerge out of the particular contexts of the participants’ daily lives. Note that the sample for this study was not constructed purposively to include people with health problems as has been done in other qualitative studies of information seeking practices online (Henwood et al., 2003; Kivits, 2004; Nettleton et al., 2004; Orgad, 2005; Wyatt et al., 2005; and others). The qualifying condition for participation in this study was that respondents used the internet at home on regular basis and for any purpose. While this approach is limited, it does provide access to a wide range of diverse motivations and positions that internet users take with respect to the medical and health-related information available online. Also, unlike in earlier studies that have focused on the questions concerning the digital divide and inequalities in access to the internet (Hirji, 2004; Nettleton et al.; 2004; Wyatt et al., 2005), the participants in this project were financially comfortable individuals (although there were disparities within the participating households) for whom a reliable internet connection was available at home that had already been incorporated into their daily activities (Silverstone and Haddon, 1996).

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In his essay ‘The Well-Informed Citizen’, Schutz (1964) examined the dynamic relationships between general and specialised knowledge and between the expert and the lay person. Most important for my analysis here, he identified three ideal types exemplifying the different positions a member of society can take with respect to formal systems of knowledge: the expert, the man on the street and the well-informed citizen (see Schutz, 1964; Schutz and Luckman, 1973). The expert has thorough knowledge of a limited domain where his/her opinions are based on ‘warranted assumptions’ (Schutz, 1964, p. 122). This means that his/her statements and decisions are a product of a clear and systematic understanding of the phenomena in the given domain. Examples of experts are the scientist, the technologist and the rigorously educated and positively informed professional whose understanding of a specific area of natural or social life is based on factual information, carefully defined concepts and tested and proven laws or principles. Obviously, in this definition, Schutz has in mind the representatives of the institutionalised systems of modern technoscience. Schutz’ man on the street lacks systematic understanding of the areas in which he operates, relying instead on: knowledge of recipes indicating how to bring forth in typical situations, typical results by typical means. The recipes indicate procedures which can be trusted even though they are not clearly understood. . . . In all matters not connected with such practical purposes of immediate concern the man on the street accepts his sentiments and passions as guides. (Schutz, 1964, p. 122) Between these two types of citizens stands a third, ‘the well-informed citizen’ who does not possess expert knowledge, but at the same time feels dissatisfied with the vague knowledge of recipes or the irrationality of passions as guides in making decisions and undertaking actions. This person aims to arrive at ‘reasonably founded opinions in fields which he knows are at least immediately of concern to him although not bearing upon his purpose at hand’ (Schutz, 1964, pp. 122–123). Importantly, the well-informed citizen ‘considers himself qualified to decide who is a competent expert and to make up his mind after having listened to opposing expert opinions’ (p. 123). As a result of the progressive differentiation and autonomisation of areas and institutions of specialised knowledge in modern society,

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the gulf between the lay person and the expert increases (Schutz and Luckman, 1973). Yet, at the same time, the applications and consequences of expert knowledge penetrate the everyday life of the lay person ever more deeply, and affect it in decisive ways. Thus, the dependence of the lay person on experts and expert systems grows progressively (see also Giddens, 1990). The social type of the well-informed citizen represents a reaction of the lay person against this growing dependence. Anthony Giddens (1990, 1991) reiterates these observations in the context of late modernity. He, too, highlights the widening gap between lay and expert knowledge. Attitudes towards science, technology and other specialised forms of expertise in late modern society are marked by both ‘reverence and reserve, approval and disquiet, enthusiasm and antipathy’ (Giddens, 1991, p. 7). Under these circumstances, the profound dependence of lay people on expert systems in their everyday lives grows hand in hand with uneasiness and suspicion about these systems and the desire for emancipation from them. Even though expert systems tend to deskill actors in areas of everyday life by imposing or prescribing certain abstract rules and modes of behaviour, the possibility remains for lay actors to re-skill themselves by generating and reappropriating expert knowledge in their daily practice (Giddens, 1991; Wilcox, Chapter 4, this volume). Schutz’ notion of the ‘well-informed citizen’ can be seen as an embodiment of precisely this struggle for re-skilling and self-emancipation of lay actors. In what follows, I examine the practices of the people who participated in my study with the goal of establishing in what ways and to what extent their use of the internet for health information constituted an effort at emancipation from the expert systems of medicine and institutionalised health care provision. Does the information available on the internet and the widespread practice of consulting it on the part of lay users lead to the rise of an ideal type who might be dubbed the wellinformed patient who strives to form reasonably founded opinions and courses of action in areas of health care and medicine that are of concern to him or her and who struggles to avoid uncritical dependence on experts? If internet users are trying to reclaim some of the agency that expert systems have removed, how do they understand that agency and where do they find it?

Types of health-information seekers Various efforts have been made to document the wide variety of positions that health information seekers construct for themselves and

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occupy in relation to online medical resources: from those who are reluctant to engage with information technology or to question the authority of their doctors (Henwood et al., 2003; Wyatt et al., 2005) to the avid information hunters (Kivits, 2004), navigators (Adams et al., 2006) and creators (Hardey, 2001). Different ‘health e-types’, defined by their relationship to the internet and the degree to which they are willing to act on and with the information they find online, have been described by Nettleton et al. (2004). Similarly, based on an exploration of online self-help sites, Fox and Ward (2006) charted the trajectory spanning the divergent ‘health identities’ of their participants. They distinguished among expert patients who are compliant with the normative discourses of medicine, creative and subversive consumers of health information, and resisting deviants who come together on the internet to challenge the essence of the medical norm. Here, I am interested in the different kinds of positioning enacted by ordinary internet users as they engage with medical expertise represented by online information sources across typical situations of daily life. The concept that helps to organise the patterns I observed in my research is that of ‘use genre’ (Bakardjieva, 2005), referring to ways of using the internet arising and stabilising in typical social and biographical situations. I propose a typology of use genres that emerged from my interview research and I reflect on the kind of agency vis-à-vis medical expertise that is inherent in each of them. ‘Bandaid’ Internet use A large number of users go online led by an impulsive search for a recipe to solve occasional health problems. In these instances, the internet is considered a repository of knowledge where one can find instructions about how to deal with and solve a health issue: . . . when one of the little kids, my kids, went to school with head lice. We used the internet a lot to find out how to treat it and what to do about it and how contagious it was. So, rather than calling public health, we did eventually call public health . . . . But, I found out most of my information on the internet for that. (Helen, 36, stay-at-home mother) Um, I was concerned there was a mole, there’s actually a mole I have on my back that I thought looked kind of funny. So, I got on there and I looked up um, skin cancer. Just to find, they had pictures on

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Well, that’s interesting, because I’ve got a bit of back pain at the moment, and I don’t generally have that. So, I actually put in ‘lower back pain’ into Google today, and it came up with some exercises, so maybe I will do that. (Donald, 67, retired engineer) In these examples, a pragmatic interest that springs from a relatively minor health issue motivates the user’s search for a solution on the internet. That solution is typically pursued in the form of commonsense recipes that define the knowledge horizons of those Schutz would call ‘the man on the street’. No attempt to go beyond a recipe-type instruction for solving the problem is desired. No reasonably founded understanding of the problem and the possible approaches to it is desired. The recipes provided on the internet, it is assumed, are tested and proven in the labs of experts and the experience of other lay persons, and, as such, can be taken as guide without further explication. In this way, a pattern of uncritical behaviour proliferates with the assistance of the internet. By operating in this mode or ‘genre’, the searcher manages to appropriate the internet to locate vague knowledge of recipes that are, nevertheless, sufficiently precise for the practical purpose at hand. The information available on the internet is trusted and acted upon (see Adams et al., 2006 for a detailed discussion of trust regarding online health information). However, expertise remains a black box from which only the end product regarding recommendations for treatment is considered relevant. In this sense, expertise touches only the surface of people’s daily lives—lice infestation, a suspicious mole or sporadic back pain do not reach into the essence of one’s life project or self-identity. The work invested in finding solutions for these discomforts is rationed accordingly. The internet presents itself to users as a reliable intermediary (Wyatt et al., 2008) of expert information replacing experts. Thus, the internet, along with apples, appears to be an effective means of keeping the doctor away. The expert system of medicine proves itself useful without the trouble of direct engagement with it. Although dependence on it remains, some degree of emancipation of the user is achieved by virtue of the instant, convenient, anonymous and on-demand access the internet can provide in the way of medical solutions.

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there of different, so yeah, for health, yeah. Or even wondering about a disease I’ve gone on there a few times. (Diana, 28, student/bartender)

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The genre of online searching that I describe as ‘looking up information’ goes beyond the vague knowledge of recipes to a clarification of the elements and conditions of a health problem. The impulse to do this often arises in the context of a visit to the doctor that has yielded a diagnosis a person is struggling to understand. Often, what the person seeks is access to the vocabulary that describes a condition. Users talk about ‘looking up’ and ‘checking out’ health or drug information to make sense of their condition or illness and the impact it may have on their lives. The expectation of such an impact motivates a more questioning attitude with respect to the recipes handed down by experts or that are usually found in the repository of commonsense knowledge. By attempting to penetrate the specialised vocabulary describing their condition, patients prepare for a more active involvement in the reasoning and negotiation of their treatment. As a result, they search for terms and definitions, for clarifications and examples. The goal is basic literacy in a narrow and immediately relevant area of health, not to question or challenge the experts, but to achieve some level of understanding of these experts’ idiosyncratic language, and, possibly, as a next step, to enter into a dialogue with them. Like, at one time my doctor was giving me a prescription and I couldn’t really understand why he was giving it to me. So I went to the internet and found out what the drug was and there you go and it was ‘oh, yeah okay, this is why he was giving it to me’. Plus my father-in-law was having some problems and the doctor throws words at him that are this long (gesturing with his arms how long) and it was: What the heck are the . . . ? Pull them up and find out. (Ross, 42, mechanic) Like my mom, she’s a, supposedly, like she had a nervous breakdown this and that and the doctor she calls it this and that and I’ll look it up on the internet and see what it’s about, that all . . . . Like with my mom. Like she’s pretty up and down in health situation and if I want to search sometime what her doctor [said], like she’s anorectic [not sure], or diabetes or whatever, then I’ll check it up. (Kevin, 40, warehouse attendant) The expressed motives and practices constituting this genre of use place significant emphasis on the language that flows from the expert (doctor) to the lay person (patient) and, but to a much more limited degree,

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the other way round. They bring to mind Bakhtin’s work on dialogicality and his distinction between the authoritative and the internally persuasive discourse. Authoritative discourse, Bakhtin argued, demands that ‘we acknowledge it and make it our own’ (Bakhtin, 1981, p. 342). Authoritative discourse does not mesh with other discourses. It remains sharply demarcated and inert. In contrast, the ‘internally persuasive word’ is dialogical, ‘tightly interwoven with one’s own word’ (p.345). It is ‘half-ours, half-someone else’s’ (p. 345) and awakens new independent words from within in the form of response. This means it interacts with our own words and can be freely developed and applied by us to new material, new conditions and the new contexts we encounter. ‘Looking-up’ users may be seeking a dialogical relationship with medical expertise. They do not wish to challenge the doctor’s authority, but struggle to transform the doctors’ authoritative discourse into internally persuasive words that they can apply to the conditions and context of their own medical problem and situation. For example, Dorothy, a rural librarian who had assisted numerous patrons with their information searches captured this motivation in more general terms: People want to know what their doctors have said because their doctors have told them in Greek and they haven’t asked or found out, or their lawyer has told them something and they just don’t understand what the lawyer has said, so they want to go to a law dictionary to see what, what was actually said. You know it’s a way for people to get information that they can understand in their terms. The role of the internet as a tool for breaking the isolating shell of authoritative discourse and turning it into internally persuasive words can be detected in the experiences of Pauline and Charlene recounted in the following quotes. Their statements demonstrate also the fundamental significance of this transformation for the patient’s treatment and healing process. I mean you go to the doctor anyway or whatever for the impetigo, but I just kind of wanted to see for sure if that’s what it was and from the description it seemed like that’s what it was for sure. (Pauline, 35, floral designer) It’s a disease in my hip. Just call it avascular necrosis or AVN, bone disease and I just typed that in seven years ago. I pressed search and I got Johns Hopkins in Baltimore home page and that was it. They knew

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As Kivits (2004) noted, rather than undermining trust in doctors, such practices reveal a ‘process of both displacement and replacement of trust towards medical professionals’ (p. 525) who are still seen as the ultimate source of information. These patients’ desire is not to challenge the expertise of their doctors, but to engage in a dialogue with it; to strip the authoritative word from its inertness and to bring it out of its distant zone into their specific situations. For example, after having been diagnosed with a heart disease Paul used the internet to ‘check out’ his condition: I went to numerous sites there and got pretty spooked by some of the information I got. . . . And uh, [I] met with my doctors and they settled me down and from there I started looking at more sites and picked up books out of [a bookstore] and I found that some of the information that I had originally researched was somewhat incomplete. They had given me some of the information but not all of the information that I required. (Paul, 52, self-employed) In summary, the ‘looking up’ genre comprises a variety of motivations and practices aimed at understanding the medical discourse encountered by patients in their doctors’ offices and engaging in a dialogue with it. The presence of such a dialogue helps patients to understand the recommendations of their physicians, make them their own and confidently act upon them. In this genre, there is no desire on the part of patients to take the responsibility for their treatment into their own hands. The kind of agency that patients are looking for is dialogical. Health information seekers are positioning themselves as dialogical agents with respect to medical expertise. Doing research This is the use genre in which the counterpart of Schutz’ well-informed citizen, whom I have dubbed ‘the well-informed patient’, truly emerges and firmly declares his or her intent to be a partner of the medical expert. The well-informed patient wants to arrive at ‘reasonably founded

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everything and I was calmed right down and found out everything. So, I was able to go under operations with information as much as the doctors actually. I mean not that I have skill but you get as much information as a professional doctor can get. (Charlene, 42, unemployed teacher)

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opinions’ and choices regarding his or her health. In my observation, it takes a specific and sometimes rather unfortunate situation for this use genre to be enacted, such as when a chronic illness or the aftermath of a devastating event has turned health and information about it into a zone of primary relevance for the affected person. Here, we can truly speak of a salient health identity (Fox and Ward, 2006) that defines the individual’s sense of self and influences directly the course of his or her everyday life. More than being an impulse to educate oneself about one’s illness the position of the well-informed patient often represents a ‘subject position’ (Butler, 1993) integral to the person’s identity and carrying moral and sometimes political overtones. For instance, in the case of the Howard family, it was an interview prompt about use of the internet for health information that triggered a dramatic narrative recounting the challenges these parents had faced due to their son’s rare form of epilepsy. They had to travel a long road of investigation, education and activism in order to respond to these challenges. This, they believed, was the right thing to do in order to perform properly the role of a caretaker and protector expected from a parent. It all started with 5-year-old Tom having a 70-minute long convulsion caused by what later turned out to be his photosensitive epilepsy. I was going out of my mind. We had the paramedics here within 5 minutes and they tried giving him a shot to stop the convulsions and it didn’t work. We sat in the ambulance. I sat in the ambulance for 20 minutes while the driver and the two attendants tried to get him breathing tube down and stabilise him. We had to drive into Calgary, we had a police escort into town, it was right at rush hour and they got it stopped at the hospital. So that’s a Status epilepticus, where it’s a seizure that doesn’t end without medical intervention. Basically you go on until your heart fails. (Laura, 38, BA, researcher) This experience sent Laura on a dedicated and methodical pursuit of knowledge and understanding of Tom’s illness. In the process she found out that Tom had photosensitive epilepsy. She learned about the history of the disease and the factors that caused the seizures. Laura was tirelessly resourceful in coming up with ways to avoid the flickering of screens that could affect Tom’s photosensitive retina. She started a Yahoo group on photosensitive epilepsy and, with her husband,

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But I also feel like, it’s my child. If I have the resources . . . I mean, I went to the university library, the medical library for the first time just to go look up epilepsy so. And I have the gumption to go do that and I know a lot of parents don’t and they sit there with no information and they wait for the doctor to give it. (Laura, 38, BA, researcher) Three other practitioners of the ‘doing research’ genre emerged during my interview study: Marcia, a 50-year-old former manager disabled after a stroke, Ellen, a 43-year-old social worker disabled by Lupus and Esther, a 47-year-old housewife and farmer with Fibromyalgia. All three were proud of the subject position of the well-informed patient that had become a prominent feature of their identities and which they consciously nurtured. Esther talked about the personal growth she had gone through with the help of the internet. The internet, she claimed, had opened new doors, allowing her to be what she called ‘therapeutically productive’ by learning and then helping other people online to manage their illness. Marcia, who lost her ability to speak fluently following a stroke, maintained her intelligent, critical self by staying on top of new techniques for treating cancer and spinal injuries, brain injuries, stroke, and diseases, such as lupus. She was particularly scrupulous in researching medicines as she had little trust in pharmaceutical companies which, she felt, sometimes present the properties of their drugs in not entirely truthful ways. She searched for independent studies on the effects of the medicines she was taking and, with all her research in hand, she tried to engage her doctors in a dialogue respecting both their expert knowledge and lack thereof: I don’t take anything off of there that I consider verbatim, but it does help me formulate questions when I visit a specialist or when I go back to my doctor to get stuff or this or that. I got a list of questions or if I have done some research he may not be aware of that. He is an ordinary human being and can’t be aware of everything so sometimes I share information with him and I give him the paper I have pulled off the net.

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Andrew, regularly updated Tom’s doctor on the newest developments in that area:

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Ellen said, ‘I’m one of those people that um, well I think I’m a doctor [laughs] that’s probably the easiest way to put it’. Ever since her children were young and were going through various chronic infections, allergies and other health problems, Ellen did a lot of medical-type reading and pharmaceutical research, even venturing into what she called the ‘hard texts’, initially in libraries and later on the internet. When she was diagnosed with lupus, Ellen worked to create for herself a wide and diverse network of resources from which she draws regularly to understand her condition and to stay informed and aware of the latest medical research findings. She subscribes to a health news mailing list, e-mails questions to the Lupus Health Net organisation in Calgary and reads material on websites concerning both mainstream and alternative medical approaches to the disease: And thankfully, I have a wonderful doctor who respects my knowledge and so I can come in and say okay, this is what I’ve read and this is what I know, and so how does that jive with what you know. And then we sort of work together on my health so I feel a lot better about that. I really like to be active in those things. Like the good citizens who provide feedback about their health experiences to improve the system (described by Adams, Chapter 12), Ellen responds to surveys for the Health Net, reporting on her symptoms and the progression of her illness. She described the importance all these activities had for her as a person. In so doing, she demonstrates the wellinformed patient as a subject position that is diametrically opposed to what Parsons (1951) called ‘the sick role’: Oh, they’re very important because I’m just, I like to know things [laughs]. I’m nosey, I like to know [laughs]. So, yeah, no, I like to research and I like, and I’m not as politically active as I used to be or as much as I would even like to be, but at least this makes me feel like I’m doing something to still be aware and those kinds of things. It should be recognised that relatively few of the participants in my study engaged in behaviours that fall into the ‘doing research’ genre. A specific configuration of social and personal circumstances or, in Schutz’ terms, a specific social–biographical situation, proved to be the hotbed of this use genre. The health information seekers who practice this genre positioned themselves not only for dialogue with medical expertise, but also for equitable participation in its growth and

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application to their personal cases, as well as more broadly. As the examples described above illustrate, these individuals were able not only to learn from and negotiate with their doctors, but to educate them using the information they had independently found and selected. Through these actions, they claimed agency as participants and collaborators in medical expertise.

Conclusion To use loosely an Actor-Network metaphor (Latour, 2005), the internet has become an inseparable actant in the health care provision network inducing numerous changes in the configuration and conduct of the human actors involved. If we agree that medical diagnosis and treatment courses are as socially constructed as any other scientific truth or technical solution, it would be fair to say that the internet can play an important role in the process of stabilisation of patients’ diagnoses and their treatment. Enticed by the affordances the internet presents, impatient patients see opportunities for emancipation from uncritical dependence on the expert system of medicine. Underhill and Mckeown (2008) report that the larger the breadth of users’ internet-based activities, the more likely they are to search for health information online. This consolidating habit of some individuals to search online for information pertaining to all areas of life, combined with the availability of a wealth of information, provides the basis for the emergence of an active stance among patients. However, access to information alone does not automatically lead to sweeping empowerment of patients (as discussed at length elsewhere in this volume). People aspire to agency vis-à-vis medical expertise in different forms and degrees. In this chapter, I set out to advance the project already undertaken by others (for example, by Fox and Ward, 2006; Henwood et al., 2003; Nettleton et al., 2004) that aims to disaggregate (Woolgar, 2002) the massive phenomenon of searching for health information on the internet. My analysis suggests three main forms of health-related agency in the practices of ordinary internet users. Depending on the local circumstances and particular contexts of individuals, the internet is used as a means to distance from expertise, to enter into a meaningful dialogue with experts’ authoritative discourse, or to partner with experts in the treatment of a condition and/or to expand the horizon of existing medical knowledge about it. These positions are neither predetermined by personal or structural qualities, nor fixed for any extended length of time. Rather, they are available to health information seekers

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who may move between them depending on changing situations and corresponding interests. The qualitative nature of the data I used as the basis for this analysis does not allow any reliable measurement of the proportion in which these different positions are represented among health information seekers and the conditions that bring them to life. Yet, the in-depth examination of numerous individual cases suggests that the three types of positioning emerge within specific and dynamic configurations of material, social and cultural capital, educational, occupational and life experiences (see a similar argument in Fox and Ward, 2006, regarding divergent health identities). It is possible that these different positions, when occupied by patients, may warrant specific responses on the part of the health care system and its professionals in the expert–lay encounter. For those who seek dialogue, for example, the doctor or nurse should be prepared to play the role of a ‘warm expert’ (Bakardjieva, 2005; Wyatt et al., 2005) who helps to connect the abstract world of formal medical knowledge to the personal concerns and experiences of the patient. Often, medical professionals are perceived to be rather cold experts (Kivits, 2004; Wyatt et al., 2005) and patients are left to wander alone along the puzzling trails of health information, both online and off. There are structural reasons for the scarcity of ‘warmth’ hardwired into the health care systems of different countries, such as challenges arising from limited times for health care visits, lack of access to family doctors and so on. In addition, the codes of practice of some of the medical professions themselves continue to prescribe a largely top-down approach to educating patients (Bella et al., 2008). It is no wonder then that doctors may resist the interpreter’s role that some patients wish to foist upon them and worry about a ‘reverse information asymmetry’ (Ahmad et al., 2006; Bella et al., 2008). In contrast, the experiences of the well-informed patients described here suggest that there are numerous opportunities to explore and even embrace such reverse information asymmetry. Finally, with respect to the ‘ideal type’ of the well-informed patient, it appears that he or she is not a creature who is brought into being solely by network technology, abundant information and smart research strategies. Rather, this kind of patient is an engaged citizen of the health care system and that is where the Schutzian terminology is particularly suggestive. The well-informed patient is a subject position indeed, furnished by access to particular points of the technical and informational networks that comprise the internet, but it is more importantly a civic position chosen from within a repertoire that emerges in the context of

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broader social, cultural and political ideas and discourses. That makes the well-informed patient a subject position with expressed political underpinnings. This quality distinguishes it from the disciplined ‘expert patient’, the demanding consumer and the deviant contrarian captured in earlier research. Constitutive of the well-informed patient position is the effort to reclaim and emancipate one’s self from the canons and authoritative institutions of medicine, without negating medical expertise. This is evident, for example, among some of the participants in the Net.Weight project described by Henwood and others in Chapter 13. Those who identify with this position do not necessarily trust expert systems, but seek a form of critical involvement and partnership with them. The position represents an extension of a person’s reflexively chosen self-identity that combines features such as inquisitiveness: ‘I’m nosey, I like to know’, independence of thought and judgment, making decisions about one’s own life and often, building solidarities and helping others. The recognition of this political and civic edge as a defining characteristic of the well-informed patient makes it clear that the internet, with all its information resources, cannot be expected to deliver this type of patient by itself. It needs to be joined and animated by a civic culture of active engagement and radical questioning of expert systems in their capacity as socially and politically constructed entities.

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Maria Bakardjieva

Sourcing the Crowd for Health Experiences: Letting the People Speak or Obliging Voice Through Choice? Samantha Adams

In 2008, EURIM, a UK-based group that ‘brings together politicians, officials and industry to . . . support of the creation of a globally competitive, socially inclusive and democratically accountable information society’ (EURIM, 2009) released a report entitled, ‘How to Achieve Citizen-Centric Service Delivery: Let the People Speak’. In this report, EURIM claims that, new web applications such as YouTube or Patient Opinion enable people to monitor the state and to be heard. People can easily post videos of dirty hospital wards, of uncollected rubbish, or of pot holes in the road, to a world-wide audience . . . . Sous-veillance might transform political engagement due to its ease of use, by engaging even the time-poor majority and extending citizenship beyond the usual special interest groups. (EURIM, 2008, p. 5) The ‘new’ web applications referred to in this quote are actually older applications (such as wikis, blogs and social networking interfaces) that have recently increased in popularity. These applications facilitate collective knowledge production by allowing the end-users of a website to provide content for that site. They also blend different media genres (Herring et al., 2005), containing a mix of not only older and newer web applications and tools, but also more traditional media such as film, television and radio. With such applications, knowledge of programming languages is no longer a pre-requisite to providing web-based content. 178

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Individuals can contribute content to a specific web space simply by filling in a form or uploading a file and then clicking on ‘submit’. This so-called ‘push-button publishing’ purportedly lowers barriers to distribution, makes individual information production easier and allows more people to participate in online information exchange (see, for example, Blood, 2004; Coleman et al., 2008; Goldman and Schmalz, 2007; McIntosh, 2005). In business sectors, these web applications are increasingly used to facilitate a practice known as crowd-sourcing: gathering individual information, opinions and experiences, and transforming these into collated feedback on specific problems or for general quality control and policy change (see, for example, Brabham, 2008; Scoble and Israel, 2006). In health care, similar practices are being encouraged with the establishment of websites (such as Patient Opinion, mentioned above) that actively solicit stories about lay experiences with care provision. Patients and their families are asked to provide feedback— about institutions, physicians, treatments, information and services— that can, in turn, be used by patient peers for personal decision-making, and by other parties (professionals, researchers, policy makers) for institutional or state-level programme/policy development and quality improvement. In this chapter, I position four websites that invite patients to share their stories and write a review of received care within ongoing discussions about institutional transparency and personal reflexivity. The experiences being shared on these sites focus less on medical content (facts about a disease, coping with an illness, composition of prescribed medications etc.) and more on the provision of care (information provided, interactions with physicians or institutions, reactions to treatments, quality of services etc.). Medical content and provision of care are, of course, intertwined, and reflexive constructions of the self comprise both aspects. Research of the (online) reflexive self, however, has mostly examined individual constructions of illness/body (for example, Hardey, 2002; Pitts, 2004), rather than understandings of various aspects of care provision. My shift in focus towards the latter is important because, as I discuss below, when individuals are invited explicitly to review an institution, service or provider, there is a secondary expectation (more overt than in the case of constructions of illness) that the information gathered can be used by the organisations that operate these sites for other social and political purposes. Advocates of using new web applications for health care-related purposes suggest that juxtaposing this information with other types of

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information in a new body of ‘evidence’ will generate transparency in health systems (Birnsteel et al., 2008). Critics, however, have questioned the feasibility of such ideas as it is unclear whether personal experience information can be transferred to a different context and how ‘anecdotal’ information from patients will be valued in relation to information contributed by researchers, policy makers and professionals (Broom, 2005; Callaghan and Wistow, 2006; Harrison and Mort, 1998; Schuler and Day, 2004). Given longer standing concerns about the reliability of information (Adams, 2006), institutions may be concerned about the consequences of allowing information that is not necessarily verified (or verifiable) to be posted online. Not all comments are acceptable and, as discussed below, website editing policies and practices may have consequences that conflict with promises of transparency (see, for example, Rogers, 2004, on normative questions and transparency issues related to the UK Citizens’ Portal open forum). More recently, physicians in the US have sparked debate with the introduction of patient–provider contracts intended to preempt patient contributions to such websites (Abrams, 2009). I first sketch the context of recent developments in Western health care systems (moving towards patient-centeredness, encouraging reflexive consumerism and emphasising individual choice) and then use a discourse analysis to review websites from three different countries (the US, England and the Netherlands). In the discussion, I examine how understandings of transparency are being extended and how reflexivity is being skilled as a civic practice. I highlight how individualised, private, economic perspectives that focus on consumer choice are becoming intertwined with collective, public, political understandings that emphasise the importance of citizen voice and community participation.

‘Reflexive modernity’ and discourses of choice and voice Scholarship on changing governance of public services in Western society tends to point to the work of sociologist Anthony Giddens as pivotal in the reconstruction of understandings of individuals in Western society (see, for example, Newman and Kuhlman, 2007). According to Giddens (1991, 1994a), late modernity is characterised by globalising tendencies of institutions that consequently affect localised, daily activities by influencing how individuals understand the self. Rather than passively accepting the status quo, individuals arguably demonstrate ‘reflexivity’ by continually monitoring and assessing information

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coming from different sources and making sense of the claims being made. Reflexivity refers to how people, both individually and as members of social groups, actively monitor their actions and contexts, drawing upon the knowledge available to them (Wyatt and Henwood, 2006). Giddens’ idea of the reflexive self is evident in neoliberal discourses that focus on the rights and responsibilities of individual citizens and invokes the notions of choice and voice to reach the public. These discourses emphasise that individuals must understand the options available to them and exercise the right to choose in daily personal and social activities (Clarke et al., 2007; Mossberger et al., 2008; Naiditch, 2007). In the UK, this is especially evident in areas of the public sector, such as education and health care, where government policies are based on an understanding of citizens as rational actors (Cordella, 2007; Fox and Ward, 2006; Hardey, 1999; Klecun-Dabrowska and Cornford, 2000). That is, the individual targeted by these policies is constructed as an informed, empowered, reflexive self, who actively chooses between available options and searches for structured information to support this choice (see also Bella, Chapter 2 and Henwood et al., Chapter 13). Individuals are increasingly addressed as health care consumers, rather than patients, and are incorporated as partners in dialogue and decisionmaking in the health care encounter. These shifts in health care governance reflect a New Public Management (NPM) approach to health policy (Cordella, 2007; Gray and Harrison, 2004). The NPM promotes a results-driven culture for public services, redefining ordinary citizens as ‘customers’ of those services and adjusting services to meet citizen/customer needs (Cordella, 2007). This approach makes government and professionals more accountable and is said to increase transparency, efficiency and quality, while simultaneously decreasing expenses. In health care, this means, among other things, that providers and institutions must be ‘transparent’ about their performance. An important aspect of NPM in general is the rationalisation of information flows between citizens and governments and/or service providers (Cordella, 2007). To overcome classical information asymmetries in health care, patients must receive information, not only about a specific illness or health situation, but also about providers, institutions and the general provision of care. Web-based information, especially, is increasingly incorporated in these national governance programmes. Because the world wide web ‘maintains the collision between alternative accounts of reality’ (Rogers, 2004, p. 1), it is viewed by many as an important facilitator of decision-making, the reflexive self and increased citizen participation. Western governments have tried

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to capitalise on the perceived benefits of the web and have sought the most effective ways to use internet platforms for providing information and services (Coleman et al., 2008). One example is the establishment of national web portals that provide information about institutions, providers and quality of care (for example, indicators, waiting lists) that individuals are expected to use when making decisions about their care. In this respect, individual patients become levers in the governance of health care providers, while information in its diverse forms enables them to fulfil this role. Considering again the opening quote from EURIM in an NPM context, we see that, with the use of newly popular web applications, there are also other ways that patients and other internet users are levers in the governance of health care providers. Namely, not just as recipients of information about the quality of care, but as unofficial surveyors who monitor the entire care situation and provide performance information in return. Institutional disclosure of quality indicators is complemented by public disclosure of anecdotal information originating from individuals and groups. Traditionally, the notion of ‘choice’ associated with NPM and individual patient options is addressed separately from the idea of ‘voice’ that is associated with collective representation or participation at the policy level. ‘Choice’ in health care largely emphasises the individual right to make choices regarding one’s own care, with reflexivity being interpreted as a consumer-oriented practice of seeking and ordering information related to the personal health situation (medical content), more active engagement in the medical encounter or opting for certain health care organisations and services. Conversely, ‘voice’ is classically associated with citizen-oriented behaviour (responsibility), and often addressed as an issue of collective representation or participation (for example, through patient organisations) at the policy level. The primary linking factor until now has been the exit option (Hirschman, 1970), but there are ongoing attempts to find alternative options to classical models for capturing voice, other links between choice and voice and new means to involve patients in decision-making about health services (Greener, 2008). The various roles for patients, citizens and consumers in policy documents are poorly defined and often used interchangeably (Callaghan and Wistow, 2006). Furthermore, binary distinctions associated with the terms ‘citizen’ and ‘consumer’ have become increasingly blended as individuals are expected to take on hybrid roles, for example, patient-as-citizen–consumer (Clarke et al., 2007). Consequently, other binary distinctions, such as those between choice and voice, individual and collective and rights and responsibilities, become blended as well.

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I analysed four websites, visiting these periodically between January 2008 and July 2009: two UK-based sites, and one each from the US and the Netherlands, not to draw direct comparisons between the sites or countries, but to highlight specific themes in set-up, approach and policies. For each website, I reviewed the home page, ‘About Us’, editorial and submission policies and disclaimers. I also took a sample of posted comments, comparing how information is structured and presented (see Table 12.1).1 1. NHS Choices (UK) offers individuals the ability to find services, compare options and offer thoughts that will ‘eventually become part of a “scorecard” showing the public’s opinion of every hospital’ (National Health Service, 2009a). The site conveys a functional understanding of choice in that it largely focuses on current market options for health services provision and consumption. 2. Patient Opinion (UK) solicits information from those who have already been through the health system. Based on the premise of making ‘the wisdom of patients available to the NHS’, it contributes to the act of choosing, but places a greater emphasis on a broader goal of improving the quality of services and facilitating the collective learning between individuals within a ‘community’ (Patient Opinion UK, 2009). 3. Consumer and Care (The Netherlands) addresses individuals and patient groups, reflecting the strong political presence of patient organisations in the Netherlands (Consument en de Zorg.NL, 2009). Patient organisations are integral to the audience of this site, indicating intertwined goals: improving individual (peer) information exchange, facilitating good choices and collaborative learning, facilitating the interconnectedness of representative organisations, initiating dialogue and better incorporating individual voices in collective representation. 4. Story Bank (US), a subsection of the Utah Department of Health website for Utah residents, ‘is a collection of health-related stories from Utahns who wish to share their experiences with others’ (Utah Department of Health, 2009). Stories are collected to demonstrate to the state legislature the societal importance of increasing health care spending and to create media messages/health promotion resources. Two important themes emerged from this review: Strategies that sites use to enrol their audiences as information providers and (suggested)

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‘Share your experience’ sites

184 Overview of cases

Name, URL and date(s) of review

Country of origin

Established by

Purpose(s)

Consumer and Care www. consumentendezorg. nl Included: July 2008 Subsequent review: March, July 2009

NL

The Dutch Patient and Consumer Federation (NPCF)

– Help individuals and patient organisations learn from one another and strengthen collaborations – Help individuals compare and contrast options – Improve patient representation – Improve quality of care

NHS Choices www.nhs.uk Included: January 2008 Subsequent review: July 2008, March 2009

UK

The UK National Health Service in partnership with the National Library for Health, NHS Direct, the Healthcare Commission and other organisations

– Help individuals find services and compare options – Create a public opinion ‘scorecard’ for each hospital.

Patient Opinion www.patientopinion. org.uk Included: January 2008 Subsequent review: July 2008, March 2009

UK

An individual General Practitioner

– Provide feedback for change in the NHS

Story Bank health.utah.gov/ bhp/sb Included: July 2008 Subsequent review: March, July 2009

US

Utah State Department of Health

– Collect evidence for lobbying the Utah state legislature for more budgetary provisions for health care – Create health promotion resources

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Table 12.1

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practices of editing/repackaging submitted information. I address these themes in the subsequent sections and then discuss how they relate to broader goals of stimulating/increasing choice, learning and participation.

Enrolment strategies focus on individual and collective rights and responsibilities, and on the collective benefits derived from each individual contributing to the community (Pitts, 2004). Personal rights are addressed—it is your body and your health, therefore, you must (be able to) choose—but these rights are entangled with the responsibility of sharing with others the reasoning behind (and result of) choices made, so that they, too, can choose. This invocation of ‘we feelings’ (Beck et al., 1994) takes on different forms. The introductory text of Story Bank addresses the user informally: ‘do you remember the first time that . . . ?’ It draws upon common examples that are prominent in the current US health landscape and with which many persons can likely identify, for example, difficulty in trying to lose weight, success in surviving cancer, witnessing a loved one deal with a diagnosis and related change in lifestyle. This implies that if someone remembers his/her own experience, then s/he can help others by either sharing information that was especially helpful or reflecting in hindsight on missing information that would have been relevant. The name of the site, ‘Story Bank’, resonates with the idea of a blood bank, to which US citizens are often asked to contribute. Much in line with American public service advertisements encouraging blood donation, and with more general health promotion programmes, participation is positioned as simple and non-time-consuming (Singleton, 2005). On the Story Bank site, the Utah Department of Health emphasises the citizen aspects of participation over the consumer aspects of decision-making. Participation is more about contributing one’s own stories than about reading others’ stories and using these to choose, although this is implied in the language of learning from one another and increasing public awareness. Information about experiences is transformed into a tangible ‘something’ that is easily captured, understood and transformed to help others, to solve problems and to achieve wider goals—goals related to social responsibility and community values (Klecun-Dabrowska and Cornford, 2000) and to general good health and healthy living. Another ‘we’ strategy is the emphasis on building an ongoing partnership between the individual and the website. NHS Choices carries a

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Enrolling site users to ‘participate’

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People tell us that the most important thing for them is that their story is used to make services better for other people. So, we will always try to send your postings to just the right manager, so that they see what you think. We know that they listen because they post replies saying how they have improved a particular service. (Patient Opinion) Patient Opinion reflects a patient organisation approach to health care problem solving, where sharing experiences forms the basis for a collective identity that can lead to action for change (Barbot, 2006; Naiditch, 2007). This approach is based on the idea that input from everyone is necessary—evident not only in the personal ‘we need you’ approach of the site, but also in the emphasis on how single stories can make a difference. The potential impact of one anecdote is reiterated on various pages of the sites, where sharing narratives is encouraged, thus stressing the importance of individual voice. Feedback, the various sites suggest, will help improve the following: web-based decision aids (‘your input can help improve NHS Choices’), the provision of health services being chosen (‘your story can change the NHS’, Patient Opinion), general knowledge in professional realms, (‘how you can contribute to medical science’, NHS Choices) and healthier living (‘you may help increase awareness and promote better health in the community’, Story Bank). Single stories are necessary to help fellow patients, but, when bundled, it is suggested, can also become catalysts to (national-level) health system change. Editing practices and information presentation Bundling information reminds us that these websites are not the endproduct, but a means to an end. They are run by organisations with specific ideas about how information can be collected, (re-)packaged and used for diverse goals. Behind-the-scene work is necessary for converting this information into specific formats that serve various purposes. Editing work is perhaps most evident with sites that contact institutions directly with recommendations for improvement, or that repackage information into regular reports or policy documents for

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banner at the top of its pages that states, ‘Our NHS, our future’. Although the second UK-based site, Patient Opinion, is not from the NHS, the site also invokes the national structure, ‘this is our NHS . . . let’s make it better’ in reaching out to its audience. ‘Your story can change the NHS’, further suggests the impact of each individual:

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health institutions or policy makers. This can be viewed as one form of info(r)mediation, with the persons doing the editing effecting the transfer of information between sources and recipients (Wathen et al., 2008). Another form of editing is making submissions web-ready. There is a delay between submission and posting of comments on most sites. Each site lists rules for contributing and explains how personal information and comments are handled. According to Patient Opinion, approximately 5 per cent of submissions to its website are not posted because the information is outdated, is not about the NHS or is in the form of a complaint (noteworthy, in light of Allsop and Jones’ (2007) discussion on the role of complaints in the NHS). Registering for Story Bank means agreeing to the right of the Department of Health to modify content and structure, and to its right to refuse stories based on content or failure to promote healthy living. Consumer and Care emphasises that the reviews are voluntary submissions and that no fact checking has been done to ensure the reviews are correct. It also indicates rules regarding the nature of language and the removal of individual names. One editing practice results in a skew in the balance of information presentation on Consumer and Care. Care institutions have an explicit right to respond to negative reviews, for example by posting examples of good care. Negative reviews are balanced out with a rubric that offers either positive comment from others or a response from the institution/organisation in question. Positive reviews on the site, however, are not explicitly complemented by a rubric of other user reviews—these comments stand alone. Although it is possible to click on the name of the hospital in question for an overview of all submitted reviews, this requires extra effort on the part of the site visitor to create balance or search for information on less positive aspects of care. While it is logical that care institutions would not link to more negative posts about themselves, it is noteworthy that there is an implicit system of reputation protection. Web-editing also requires coupling text with symbolic information. In publicly presenting rankings and comments, the site design of NHS Choices de-emphasises textual comments in favour of comparison tools, such as charts and graphs. Even the option to comment becomes deemphasised on secondary comparative pages. Whereas diamonds, stars or other symbolic representations are used on some sites for collective ratings, Consumer and Care also uses these to represent individual impressions of service in four areas: listening, information, employees and appointments. Rating these four areas using options chosen

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from a drop-down list is required when submitting a review and the emoticons are posted at the top of each review text. Originally, the site used emoticons: a green smile representing ‘Good’, a yellow straight face, ‘Sufficient’ and a red frown, ‘Poor’. Although these choices were limited, these arguably recognisable symbols and a well-known traffic colour scheme break away from a primarily text-based manner of information presentation and can also benefit specific types of information seekers. The site now uses another familiar rating system, five stars, to convey user ratings in this area. This example demonstrates how discursive, contextualised information on the process of patient– professional interaction is reduced to a series of symbols or images (Lash, 2002).

Loci of political action and symbolic exchange By asking individuals to write a public review of services, ‘share your experience’ websites promote individual practices of monitoring professional behaviour and institutional practice. The language of these sites demonstrates, however, that ‘reflexive’ consumerist behaviour related to monitoring practice does not automatically come from individuals, but is encouraged by website creators, who position themselves as spokespersons for a ‘collective’ and enrol site visitors into said collective, in whatever form. While encouraging individual participation and voice, they nonetheless stand between patients and other actors, enacting and mediating relationships (Wathen et al., 2008). By targeting individuals who do not necessarily fit into a specific patient group, such as those with an acute medical problem, these sites also add to this collective those in society who are unorganised and, possibly, unheard. Such websites can therefore be viewed as loci of political action, where actions and events are made available in the public domain through a process of symbolic exchange (Thompson, 1995). Individuals are asked not just to share their stories, but also to reveal what choices they have (or have not) made and why (Gouldner, 1976; Slevin, 2000). This affirms Gouldner’s (1976) claim that mass media and ‘the public’ mutually construct one another and Naiditch’s point that patient organisations, by mediating between actors, play an important role in shaping collective identities. Not only do they endorse new social responsibilities, but they also serve as instruments to help individuals organise the ‘citizen’ (voice/responsibility) and ‘consumer’ (choice/right) aspects of their lives (Naiditch, 2007). The websites, therefore, are used to order relationships between organisations, groups and individuals through specific forms of

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Changes in scope and scale of the intended audience The ideas addressed here are not exactly new. Special interest groups have a long history of struggle to obtain visibility for the relevance of their views (Slevin, 2000). This includes, but is not limited to, various constellations of patient collectives (see, for example, the work of Barbot (2006), for an extensive history of different generations/types of AIDS activism in France). Second, specifically in health care, sharing information about experiences or choices and encouraging collective action are already key aspects of online peer-to-peer information exchange (Akrich et al., 2008). The difference lies in how these elements come together: online discussion groups are generally topic-specific, peer-to-peer information exchanges (sometimes moderated by a health professional), where ‘communities’ comprise individuals with shared health situations. Such discussion groups are not special interest groups in the more general sense because the primary purpose of most is not political mobilisation (necessarily preceded by gaining visibility), although this can result in some cases. They are established by or for specific target populations. With new websites, space is created to discuss the general care context. Geography and institutional patronage become the linking factors between individuals, rather than a specific illness or health condition (although these can be secondary means of structuring information, for example, through tagging). Similar to portals (see Adams and de Bont, 2007 and also Veinot, Chapter 3, this volume), those establishing sites presume that the ‘community’ already exists and that it comprises the general population of a country, state or region. At the same time, the sites clearly indicate that they are about more than just facilitating choice through peer information sharing—there are underlying political goals. As mediators, site administrators are not acting on behalf of predefined groups struggling to be heard, but rather are actively creating groups and the interests to be fought for. This raises the issue of exactly whose interests are being served and what is gained by encouraging this particular form of participation. Moreover, although the population being addressed is now arguably larger, and technology is presented as removing barriers to participation, it is important to remember that

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dialogue (Giddens, 1994b), and can also be viewed as attempts to repair rifts resulting from increased individualisation, the erosion of professional status and the weakened authority of the nation-state (Lash, 2002; Trommel, 2006).

Sourcing the Crowd for Health Experiences

participation is still limited. The nature and degree of participation granted to and required from individuals depends on the possession of certain skills, capabilities and resources for dealing with both technology and information (Hargittai, 2002; Thompson, 1995). Not only must users navigate a site, they must also ‘translate’ their experiences such that the contributions they make are relevant and can easily be repackaged for various purposes. Only specific types of individuals will demonstrate the ability and the interest to take on such tasks and it is important to consider how unexpected contributions and the right not to choose (or voice one’s opinion) figure into understandings of the relationship between these sites and patient–citizen–consumer participation.

Reconfiguring transparency Along with changes in the scope, scale and audience, understandings of transparency are also transforming. The need for more transparency in health systems is largely interpreted as an institution opening up to its patrons. Calls for transparency have resulted in (online) publication of indicator sets on quality and waiting lists, and comparison sites such as NHS Choices. Now, new sites are created with the idea that publishing customer comments will oblige hospitals to be more transparent about their policies and practices because they must respond to publicly broadcasted concerns and complaints (Birnsteel et al., 2008). It is important to examine such public-ness and tease out the opportunities and limitations it offers for renewing dialogic spaces, for example, forging new alliances, entering into new social arrangements and monitoring opinions (Akrich et al., 2008; Slevin, 2000). A key aspect of examining public-ness lies in understanding how persons evaluate and use these extra layers of information to form reasoned judgements (Gouldner, 1976). It is important to note, however, that this does not mean that choice is the only, or even the primary, issue. Not only are institutions opened up, but the structure of health-care decision-making is also transformed into a (partial) public dialogue (Beck et al., 1994). ‘Individuals are not just users of communication systems; they are also participants in political communities in which the competent formation of opinion and the making of decisions depend on the availability of information and the monitoring of differing ideas of others’ (Slevin, 2000, p. 214, emphasis added). Where monitoring the opinions of others aligns with the aforementioned reflexivity of monitoring one’s own

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actions (and the contexts in which they occur), reflexive consumerism cannot be reduced to the idea of choosing between two or more options on the basis of indicators or rating systems. Once exposed to information coming from others, individuals must continually negotiate their options, defend the choices they make on the basis of this information and also seek ways of making their own views heard (Slevin, 2000). That individuals are expected to be more transparent about their actions and choices is also logical, given the role that surveillance (or ‘sous-veillance’) plays in ideas regarding reflexivity in modernity (see, for example, Foucault, 1977 on surveillance, and Thompson’s, 1995, discussion in relation to media). As Slevin (2000) argues, even Giddens has a limited view on surveillance, which actually works two ways and requires both the accumulation and dispersal of information. In this regard, how the sites presented here are designed is relevant to the maintenance of surveillance capabilities, but also to certain degrees of authority. While the idea of hospital visitors engaging in video ‘sousveillance’ of an institution may be rather extreme, the suggestion in the opening quote at the beginning of this chapter is important. Aside from coping with an illness and being therapy compliant, individuals are already expected to make certain lifestyle choices and be better informed about issues related to care (Crawford, 2006). Additionally, they are now expected to carry out the work of providing others (not just patients, but also physicians, researchers, care institutions and policy makers) with specific types of information about individual and institutional performance. Individuals must now, as part of the collective, bring to legislative processes the work previously done only by researchers, lobbyists and special interest groups—providing a gauge of satisfaction, evidence for score cards, legitimacy for political decisions and advocating increased resource allocation for health care. They also share with health educators and government agencies the responsibility for developing public health promotion materials and ensuring quality control. Share your experience sites, therefore, promote and validate specific types of immaterial labour (Allen, 2008). Furthermore, they are yet another reflection of how specific tasks are reassessed, redefined and shifted to others—out of the public sector and into the home (see Bella, Chapter 2). Because it is unclear if individual patient–citizen–consumers are willing to take on the roles being prescribed for them, subsequent research should address the consequences of encouraging such shifts in the burden of work to the patient and/or family members.

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The emphasis on collaboration between different actors, and especially the importance of each individual voice, links sharing experiences to civic practice, with information production being constructed as a responsibility of all individuals, who ‘participate’ by contributing to both the peer community and to broader-ranging state goals (Adams and de Bont, 2007; Pitts, 2004; Singleton, 2005). This link is especially evident in an e-mail sent from the Organising for America project of the US Democratic National Committee to its electronic mailing lists after the launch of a new website similar to those reviewed here. The e-mail concludes, ‘Last November, the American people sent Washington a clear mandate for change. But when the polls close, the true work of citizenship begins. Now, in these crucial moments, your voice once again has extraordinary power. I am counting on you to use it’ (Barak Obama, 2009). Active collaboration, therefore, shifts the focus of transparency in relation to individual reflexivity. Whereas common interpretations see this reflexivity only with respect to choice, that is, by making a choice, one has considered the options and may be labeled a ‘reflexive consumer/citizen’, new expectations for online information take this one step further. Creating a system of access to opinions/experiences that inform choice implies that someone must first voice said opinions/experiences. Reflexivity is evident when it is made explicit in text, image or symbol—when individuals explain/justify their choices and reflect their scepticism by ‘sharing stories’, rating processes and critically commenting on (or legitimising) difference aspects of health care services. With the suggestion that this is a responsibility shared by all citizens, participation extends beyond being informed about one’s health and care options (and using information to choose), to include publicising personal information for the collective benefit of society. Here we see that, beyond merely ‘letting the people speak’, where speaking is an option, the discourses of consumer choice in public services (rights) are actually used to oblige political voice (responsibility). Participation in health care policy, decision-making and quality-improvement processes is therefore shifting from a voluntary activity within an older, formal structure (for example, via citizens’ councils or short-term evaluations of ‘satisfaction’), towards an obligatory activity in which good patient–citizen–consumers are perpetually engaged. Because emergent solutions will also continue to be subject to critique and questioning, future layering of information, processes and other social arrangements

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Skilling reflexivity and participation

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for monitoring opinions and actions are probable. It will be interesting to see what role (if any) this increased layering plays in sustaining individual input at different institutional and political levels. Equally important is how individuals actually contribute to such websites and whether they will bypass these channels for alternative methods of communication, or otherwise opt out of this particular form of participation altogether.

Note 1. Table 12.1 provides an overview of the sites, including review date(s). Because two sites are relatively new and a third had few comments, the comments were not analysed for content. Consumer and Care was being revamped at the time of writing; changes are noted where possible.

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Samantha Adams

Working (IT) Out Together: Engaging the Community in E-Health Developments for Obesity Management Flis Henwood, Leslie Carlin, Elizabeth S. Guy, Audrey M. Marshall and Helen Smith

In this chapter, we combine sociological research on the ‘e-society’ and the ‘new public health’, to offer a critique of ‘e-health discourse’. Central to this discourse is the association of greater availability of information and information and communication technologies (ICTs) with notions of patient empowerment and the ability to engage more actively in self care. Drawing on an action-oriented research project exploring and intervening in the lived experience of those seeking to manage their weight, we employ a Foucauldian notion of discourse and of knowledge/power to reflect upon the sociotechnical configurations that constitute self care in the context of obesity management. We argue that while current configurations and practices do appear to reflect and reinforce dominant understandings of the relationship between information, technology and empowerment in a health context, detailed analysis of these practices reveals tensions and contradictions that suggest a more complex picture. We illustrate these tensions and suggest ways in which participatory learning can offer opportunities for engagement with the discourse of e-health, and for exploring and exploiting the tensions within it. We argue that this form of ‘engagement work’ can promote a more progressive model for e-health development—one that supports the emergence of an active, critical and engaged citizen-user (the ‘health-e citizen’) rather than the less ambitious but much more ubiquitous neo-liberal consumer-user (or ‘informed patient’). We begin by introducing the Net.Weight project upon which this analysis is based. We then explain what we mean by ‘e-health discourse’ 194

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and identify its potential for making sense of popular understandings and configurations of information and ICTs in the context of self care, in particular. Next, we consider how those engaged in weight management position themselves in relation to e-health discourse, exploring their engagements with dominant understandings of obesity, information and technologies (specifically ICTs) in particular. Finally, we argue the case for the importance of ‘engagement work’ in relation to e-health discourse—work that involves going beyond the deconstructive work of discourse analysis to embrace reconstructive efforts to engage citizens in debates about e-health so that their knowledge and their practices become active, situated and accountable, a subject position that, we argue, might be understood as constituting the ideal ‘health-e citizen’.

The Net.Weight project The Net.Weight project1 was funded by the UK Department of Health under the Information and Communication Technologies Policy Research Programme: Technologies to Support Self-care, Chronic Disease Management and Healthy Living. In the Programme Brief, ICT was defined as ‘a key technology in enabling the engagement and involvement of the public and patients in their own care’. Rather than taking the benefits of such technologies as a given, the Net.Weight project was designed to explore the experiences and potentials of such technologies from a user perspective. The project was a case study of how self care in long-term/chronic health conditions can be supported by increased, innovative and effective uses of ICTs. Obesity was chosen as the health condition or ‘case’ to be investigated, and the city of Brighton and Hove was selected as the location within which to explore information and self care practices. The project was undertaken by a collaborative partnership led by the University of Brighton and included a community IT consultancy and partners in the statutory, community and voluntary sectors that work on ‘healthy living’ initiatives across the city. The project began with a ‘provider mapping’ exercise to identify key health information providers across the city who work in the area of weight management or ‘healthy living’. The data gathered through this exercise were used as input to both a user survey and the design of participatory learning workshops. The user survey constituted a study of the everyday practices of weight management through which we sought to understand how adults (aged 16 or over) in the city of Brighton and Hove who identified themselves as ‘over the recommended weight for

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their height’ and engaged in ‘trying to do something about it’ (that is, engaged in ‘self care’) went about getting hold of the information, advice and support they needed to do so. Within this process, their use of ICTs was a particular focus. A survey questionnaire was used to gain an overview of these practices along with a series of four focus groups in which these practices were explored in more depth. Participants were then invited to join a series of participatory learning workshops (three separate groups each met four times over a period of 6 months) within which a range of information sources and ICT tools were explored and evaluated for their potential to support people’s self-defined health goals. The workshops were designed in collaboration with participants and in accordance with the principles of participatory design. Data about the participants’ experiences of taking part in these workshops were gathered both during the workshops and 6 months after they ended.

E-health discourse and self care Before exploring ‘e-health discourse’ from the perspective of Net.Weight participants, we explain what we mean by the term and explore its potential for making sense of current understandings and configurations of information and ICTs in the context of self care. In the UK, the e-health agenda can be traced back to the late 1990s when the Department of Health (DH) published Information for Health (NHS, 1998), followed by Building the Information Core (Department of Health, 2001) and Developing 21st Century IT Support for the NHS (Department of Health, 2002). These were key policy documents that set out the ways in which information and ICTs were intended to help transform the NHS and to be a central part of the modernisation agenda. In the year Information for Health was published, Bob Gann (who was instrumental in setting up NHS Direct, a 24-hour telephone and online health advice and information service in England) wrote about the potential of information technology to ‘empower’ patients and the public: The provision of information cannot only enable people to become more actively involved in their own treatment choices, but enable people to be involved as citizens in the wider development of health care policy. (Gann, 1998, p. 124) It is interesting to reflect upon Gann’s vision in the context of subsequent developments and the current health policy focus on self care.

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In particular, he makes an important distinction between the different forms of engagement with e-health that we address in this chapter. On the one hand is the individual patient-user making choices about treatments, and on the other is the citizen-user engaged in wider health policy agenda setting. Adams (Chapter 12) argues that through new e-health systems such as ‘patient experience websites’, what she terms these ‘choice’ and ‘voice’ positions may actually be becoming more closely integrated. In the analysis that follows, we return to this distinction and identify how individuals negotiate with these different positions when they engage with e-health discourse and practices. A recent UK policy document links information explicitly with self care. In the White Paper, Better Information, Better Choices, Better Health, we read that ‘Improving information can help us meet service-wide priorities’ by ‘encouraging greater self care’ which, in turn, can ‘help people make the best use of health and social care services, thereby reducing inappropriate pressures on areas of the health care system’ (Department of Health, 2004, p. 6). Designing a research project that fits within the Department of Health’s ‘technologies to support self care’ programme has offered real opportunities to explore the relationship between government policy and the ‘lived experience’ of both self care (here, in the area of obesity/weight management) as well as engagement with information and ICTs, to understand both the opportunities and the barriers to information and ICT use within self care practices. However, more importantly in some ways, it has enabled us to explore whether, in so far as ICTs have a role to play in supporting self care, they do so only within a neo-liberal/consumerist framework in which users are configured as ‘good consumers’ or whether ICTs can support self care within a more democratic framework and support the emergence of ‘active citizenship’ in an e-health context. We suggest that e-health discourse contains tensions that might, under some circumstances, prove to be productive in opening up a debate about the intended uses of such systems. These uses could, in turn, lead to the emergence of new understandings and priorities that support active citizenship. It is these tensions and opportunities that we wanted to bring out in the Net.Weight project and that we explore in this chapter. The UK government’s self care agenda can been understood as part of the new public health (NPH) discourse and the new ‘healthism’ (Peterson and Lupton, 1996). ‘Self care’, if thought of in this way, is understood as being very different from ‘self-help’. Self-help groups are often associated with a critique of modernist projects of science and medicine whereas the self-care agenda is still largely framed within the

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modernist project that is the NPH. Indeed, Bella (Chapter 2) argues that early self-help movements’ definitions of empowerment as ‘collective’, ‘political’ and intended to achieve broadly based social change have often been subverted by health promotion approaches which promote ‘state-sanctioned’ objectives. However, as Bella herself also suggests, there are signs, in the UK health policy context at least, of a more progressive discourse which encourages ‘empowerment through participation’. This is supported by recent research on self-management and self care which, whilst remaining critical of the policy emphasis on the individual and on efficacy, and whilst claiming that self-management programmes represent an abdication of state responsibility for health (Kendall and Rogers, 2007), also acknowledge emerging evidence that such programmes might be triggering a new consumer health movement built not on the medical paradigm but on the subjective experience of living with a chronic condition (Kennedy et al., 2004; Wilson et al., 2007). Veinot (Chapter 3) comments on a similar tension when she identifies two co-existing discourses—‘self help’ and ‘managerial effectiveness’—in the UK’s Expert Patient Programme (EPP). These tensions in the self care agenda reflect what Henderson and Petersen (2002) termed the ‘paradox at the heart of consumerism’ (p. 4). Whilst consumerism in health care can, through its focus on the individual, obscure the need for social change and provide the basis for regulation over bodies and lives (‘You are fat, do something about it!’), it may also, given its importance as a basis for identity in late modern societies, provide an identity label and language for (re)claiming rights for disadvantaged groups. Burrows et al. (1995) pointed to similar tensions and their creative or productive potential. They argue that public health approaches are characterised by features of late modernity or postmodernity, for example, in their attempts to distance themselves from hospital-centred curative medicine, in their focus on multi-sectoral efforts and multidisciplinary approaches and in their emphasis on the active participation of individuals. Seen in this way, public health efforts may be seen as offering opportunities for individuals and communities to determine their own goals and means of achieving them. The Net.Weight project focused on self care in the area defined as ‘obesity’ and we sought to explore how those trying to manage their weight (who could be understood as seeking to ‘self manage obesity’) came to understand their experience. We were particularly interested in whether they thought in terms of the management of risk in a way that identified with the NPH and self care agendas. We also explored how information and knowledge from different sources and accessed

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via a range of different media had shaped participants’ understandings of what constitutes health and well-being. Also of interest was the extent to which the duties discourse was taken up or resisted, that is, whether project participants experienced a sense of ‘duty’ to become informed and to take responsibility for their own health and that of their families and communities, or whether they felt free to exercise a choice not to take such responsibility without sacrificing rights to health care. Similarly, we were interested in whether the participants experienced a ‘connection imperative’—a pressure to adopt and use new ICTs to support their self care practices. Framing the Net.Weight project so that we could examine the self care agenda in the context of the e-health discourse enabled us to explore these areas in some depth. In working with community-based partners who were already engaged in ‘healthy living’ initiatives, the project provided an ideal opportunity to ‘get inside’ the lived experience of e-health and to explore how both meanings and practices are produced and negotiated. In the next section, we explore the subject positions participants take up in relation to e-health discourse when applied to weight management or ‘obesity’ self management.

Informed patients or health-e citizens? In exploring how people respond to government agendas for, and understandings of, self care, we have drawn on the discourse approach of Michel Pecheux (1982) to consider whether people can be seen to identify, counteridentify or disidentify with the dominant understandings of obesity and its management. For Pecheux, identification is the mode of ‘good subjects’ who freely consent to the prevailing discourse, counter identification is the mode of those who reject this discourse or set of meanings offered and disidentification is the mode of those who work on and against the prevailing discourse. In our analysis, we suggest that those who identify with dominant discourse might be understood as informed patients, generally following advice from ‘experts’ who are mostly narrowly defined as health and/or information professionals; that those who counteridentify can be understood as rejecting or resisting taking up the informed patient identity but who offer nothing in its place; and that those who disidentify may be understood as health-e citizens, who attempt to create alternative understandings and meanings about health (here, obesity), information and ICTs, in ways that can begin to upset the existing balance of power, including notions of what constitutes expertise in these three areas. The distinction between the

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informed patient and the health-e citizen has parallels with two of the ideal types of citizen discussed by Bakardjieva (Chapter 11). Aside from the professional expert, Bakardjieva (following Schutz, 1964) contrasted the man on the street with the well-informed citizen. Whereas the man on the street follows ‘recipes’ which are trusted even though they are not clearly understood, the well-informed citizen ‘considers himself qualified to decide who is a competent expert and to make up his mind after having listened to opposing expert opinions’ (Schutz, 1964, p. 123). Schutz/Barkardjieva’s ideal types and the subject positions of Pecheux should not be understood as mapping onto individuals in any fixed or permanent way. Rather, they are positions that individuals may adopt at different points and in different circumstances—here, in the wider context of health and health information practices. The analysis we offer below draws on data from interviews held with Net.Weight workshop participants 6 months after the workshops finished, with data from field notes made during workshops to provide a broader context. The participants’ engagement with e-health discourse is examined via an analysis of their relationships with dominant understandings of obesity, information/knowledge and the role of ICTs in weight management.

Food, fat and fear: deconstructing obesity discourse A number of detailed critiques of obesity discourse have now been published. These draw attention to what can be construed as the tension between the uncertainty surrounding the knowledge base of the primary research field and the certainty and the simplicity with which problems and solutions are defined and promoted in dominant discourse. For example, Evans et al. (2008b) argue that the narrative found in obesity discourse ‘reduces “health” (and all its complexity) essentially to an issue and indices of measurable size and “weight”, given numerical value through a Body Mass Index score’ (p. 119). They point to the problems associated with the use of BMI as a tool for screening and intervention, including the widespread conflation of ‘overweight’ and ‘obese’ categories to inflate what they call the ‘size of the problem’ (p. 119). Furthermore, following Campos et al. (2006), Evans et al. point out that, ‘although populations have become on average marginally heavier over recent years, outside of the extremes of “underweight” and “obese”, neither of these “conditions” alone constitutes much of a risk either to the well-being or to the health of populations or persons’ (Evans et al., 2008b, p. 119).

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Obesity discourse has both ‘instructive’ and ‘regulative’ aspects (Evans et al., 2008a, 2008b) and is not merely about rescuing a population ‘at risk’ but about the regulation of deviant populations through the (re)articulations of acceptable social norms and behaviours. Its messages are often aimed at those deemed to deviate from such norms (working class men and women; some minority cultural and ethnic groups) and those who are seen to be responsible for ensuring others do not do so (women as mothers, food providers and informal health care providers; health care providers and, arguably and increasingly, health information providers). Thus, obesity discourse can be understood as regulating and controlling populations while purportedly addressing their ‘health’ needs. The emphasis on ‘risk’, in particular, works to engage the public in intervention, surveillance and self-monitoring. A similar argument is made by Gingras and Aphramor (Chapter 6) who examine the role of nutritionists in promoting what they term the ‘empowerment–compliance’ approach to ‘body weight management’ work. Alongside this heavy emphasis on the individual and his/her need to better self manage in relation to weight, we also find increasing attention (in policy and academic literature) to the so-called ‘obesiogenic environment’ (Egger and Swinburn, 1997) where obesity is understood as an outcome of technological and societal level developments in transport, food production, changing work patterns and urban design, resulting in an imbalance between energy intake and energy expenditure—hence weight gain. Whether emphasis on the obesiogenic environment represents a truly alternative discourse on obesity or is merely a ‘sanitisation’ of serious political economy of health analyses of the problem (Evans et al., 2008a), its appearance in dominant discourse can be used as leverage by which more critical alternative discourses could be articulated and promoted. It particular, it has opened up calls for research that studies obesity in specific local contexts with attention to the ‘lived experience’ of obesity as witnessed by individuals in their wider family, social networks and communities (Warin et al., 2008), something the Net.Weight project set out to do. Net.Weight participants’ accounts reflect the tension found in dominant discourse about obesity. For example, at first, Alex comes across as a model informed patient: Being over 50 and reading the information that’s out there it’s vitally important that I get some of this weight down for cardiac reasons really, to get rid of it, because I am at high risk. I’m not frightened

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But later, when describing why he gave up attending a commercially operated slimming group, Alex shows signs of resistance to, or ‘counteridentification’ with, the regulative aspects of obesity discourse: I didn’t go back because of embarrassment, because I hadn’t lost weight and I didn’t want my name to be called out . . . I felt so exposed . . . I didn’t want to go back and get on that scale and she said to me, ‘you’ve put a . . . ’ I’d overeaten that week and for her to say ‘you’ve put two pounds on’, because it was like the big stick approach really, so that’s why I didn’t go back. (Alex) Amanda also challenged what she saw as the overemphasis on diet in obesity discourse. In talking about information for weight management, she appeared, at first, to be a model informed patient when she implied that following information would lead her to the right (weight loss) outcome: ‘if I used it and was disciplined with it I’d, you know, I’d probably be an ideal weight right now’. However, she very soon identified what was wrong with much weight management information: There are realities that we have to sort of think about and, you know . . . I am 60, I’m not going to have a 25-year old body and so forth. Once you get that kind of information, sort of self assessment, I think it makes it easier. What would help would be, would be a site that was real, and not trying to make you into a 60 kilo stick insect! (Amanda) Amanda went on to suggest that the internet could be used to support a more critical approach to weight management, based on the lived experience of those engaged in such self care practices: I think the internet could help with that if we, you know, if we weren’t fed this sort of ‘You should be such and such a weight’ et cetera and so forth, and fed the healthy aspect, as opposed to, you know, sort of the idealistic ‘Let’s all conform’. (Amanda)

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about that, but I’m conscious of it and I want to get rid of it really, I want to, yes. (Alex)

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Here, Amanda can be understood taking up the position of a health-e citizen, ‘disidentifying’ with the meanings and assumptions inherent in dominant obesity discourse and beginning to articulate alternative understandings and approaches. Kirstin’s account suggests resistance, too, but this time to the self care imperative itself. Kirstin was keen to lose weight and had tried many diets and exercise programmes but clearly felt burdened by the work involved in performing the good subject in relation to obesity discourse: How do I sort of reconcile all these things that need to happen at the same time in order for me to lose weight? So it’s quite a lot to sort of face up to, thinking ‘oh god, I’ve got to commit to going to the gym so many times a week, I’ve got to know how many calories I’m eating’, it’s all a lot of work. (Kirstin) Kirstin clearly feels the pressure to engage in weight management; her implicit linking of self care to ‘work’ may begin to explain why she and many others may resist identifying fully with both the self care imperative and the regulative aspects of obesity discourse. In the next section, we explore how participants engage with ‘information’ as it is understood in e-health discourse.

Information or situated knowledge? As we have suggested earlier, information is considered an essential component of self care and it has been argued that the key to the ‘informed patient’ discourse is an imperative to become informed (Henwood et al., 2003). Several issues arise in relation to the ways in which information is understood in e-health discourse. One of the most important, perhaps, concerns the tension that exists between understanding information as a neutral resource to be collected, organised, communicated and used (most commonly found in dominant discourse) and understanding information as ‘situated knowledge’, a distinction that, following Haraway (1991), can be characterised as a ‘view from nowhere’, versus a ‘view from somewhere’. Suchman (2002) made a similar distinction between a view of objective knowledge as ‘a single, asituated, master perspective that bases its claims to objectivity in the closure of controversy’, and ‘multiple, located, partial perspectives that find their objective character through

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ongoing processes of debate’ (p. 92). Information is often ‘black-boxed’ but this does not mean it is neutral; it simply means that its knowledge roots and the type of expertise it represents are obscured from view. Medical knowledge is particularly susceptible to this form of black boxing when it is re-packaged as ‘health information’. In e-health discourse, information is associated with empowerment but, as has been suggested elsewhere (Henwood et al., 2008), information cannot be empowering if its knowledge roots are obscured, and if the ‘user’ is unable to assess its provenance and its overall accuracy and validity, as well as its relevance for the particular local and social circumstances of use. Access to such ‘informational knowledge’ (Lash, 2002) severely limits the opportunities for the kind of critical engagement with information necessary for active citizenship (Henwood et al., 2008). Net.Weight participants’ accounts illustrate this tension between ‘information as empowerment’ and the knowledge/power approach very well. Their experiences of trying to unpack the information they are given and engage critically with it are not always successful. For example, when Kirstin was asked how having information and information skills worked for her, she immediately began to talk about her relationship with her doctor: I think I could go to the doctor and say that ‘I do this, this and this, and I’ve done research into it’, however I kind of got the impression that my doctor in particular is just very much focused on the body mass index and that’s all that matters, you know, the fact that I might be eating healthily and exercising has nothing to do with that, and I know as well, you know, just from reading things online there’s sort of various questions as to whether that is the best measure of someone’s health, you know, or not. But I kind of feel sometimes that my doctor wouldn’t want to hear, you know, I’ve just got to meet this criteria on this chart and that’s all that matters. (Kirstin)

When asked if her doctor offered her any support, she replied that he didn’t and that she felt left to her own devices: Yes, ‘go out and figure out for yourself’ . . . that was one thing that really kind of surprised me, he said ‘you must know about diets’, and you know, I’d actually avoided all diets up until that point, apart from

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Kirstin’s account illustrates that she was well aware of the contested nature of knowledge concerning obesity and its management. Her information searching skills had led her to identify alternative understandings of, and approaches to, weight management that reflected both her experience and her preferred approach. In this sense, Kirstin can be understood as attempting to engage reflexively with e-health discourse as a ‘health-e citizen’ or a ‘well-informed citizen’ (as described by Bakardjieva, Chapter 11). However, her negative experiences of attempts to negotiate with her doctor illustrate well how resistance is never wholly outside the relations of power it seeks to transform (Foucault, 1976) and how power produces knowledge through discourse. Kirstin’s ability to empower herself through information was clearly limited by the knowledge/power nexus in which her relationship with her doctor exists. A final area we explored with Net.Weight participants concerns how technologies, specifically ICTs, are understood in e-health discourse. Below, we discuss how e-health discourse positions users or would-be users of ICTs, and explore the extent and nature of resistance to this positioning among participants in the Net.Weight study.

ICTs in e-health discourse: configurations of technology and the user As with information, e-health discourse configures technologies (and ICTs in particular) as empowering for the user. Technologies are understood as tools that can be employed by individuals (and, increasingly, social groups) to access health information and communicate with health professionals and wider social networks in support of self care and health optimisation. Furthermore, as is discussed elsewhere in this volume, e-health discourse contains an imperative—a suggestion that one ‘should’ make use of ICTs in this context. However, the Net.Weight study employed a different approach to understanding the relationship between the technological and the social, ICTs and the user, seeking to deconstruct this dominant discourse whilst exploring the conditions and circumstances under which users might wish to incorporate ICTs

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healthy eating because they have such a bad reputation for not being a consistent long term way to lose weight. So yes, it wasn’t a helpful experience at all. (Kirstin)

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Society is not determined by technology, nor is technology determined by society. Both emerge as two sides of the same coin, during the construction processes of artifacts, facts and relevant social groups. (Bijker, 1995, p. 274) In this ‘sociotechnical’ approach, ‘users’ have become a key ‘relevant social group’ for researchers in recent years (Oudshoorn and Pinch, 2003) and much emphasis has been placed on how users shape technologies through the process of ‘design-in-use’. This idea follows from insights from both Latour (1987) and Bijker et al. (1987) who argued (respectively) that ‘the fate of . . . machines is in later users’ hands’ (Latour, 1987, p. 259) and that machines only ‘work’ when they have been accepted by relevant social groups (Bijker et al., 1987). These ideas are important, not least because they can help us understand user resistance to new technologies, which can be seen as a reflection of the lack of ‘fit’ between the models inscribed in these tools and the actual nature of work they were designed to support. This has been particularly obvious in health care (Berg, 2004). The lack of fit results in user ‘work arounds’ and ‘resistive compliance’ (Timmons, 2003). It is not that the machines don’t work in the sense of performing the functions they were designed to perform but that their very design fails to capture the complexity and contingent nature of much health care work. What is important about the concept of the ‘sociotechnical’ is that, when applied to design, a space is immediately opened up for exploring the social arrangements that need to be in place for ‘machines’ to ‘work’. Mark Hartswood and colleagues developed the design-in-use approach in health care in which skilled facilitators engage users and IT specialists in a process of what they call ‘co-realisation’ of ‘work affording systems’ (Hartswood et al., 2002, 2003). In another study on electronic patient records in maternity services, the hybrid ‘IT Midwife’ was able to perform this role, showing clearly how Latour’s ‘later users’ are instrumental in making machines ‘work’ (Henwood and Hart, 2003). In the Net.Weight project, we attempted to create an opportunity for such ‘later users’ of e-health systems and tools to debate the conditions under which these ‘machines’ could be made to work for them.

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into their self care practices. Following Bijker (1995), our approach understands that:

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The sociotechnical approach recognises no clear-cut boundary between design and use. Designers must work in relation to specific use settings, just as users must take on the work of designers. What Suchman (2002) defines as ‘all those activities currently glossed under the notion of technology adoption’ (p. 93) becomes the focus for the work that needs doing. This includes ‘appropriating the technology so as to incorporate it into an existing material environment and set of practices’ (Suchman, p. 93). Such integration, local configuration, customisation, maintenance and redesign in this view represent ‘not distinct phases in some “system life cycle” but complex densely structured courses of articulation work without clearly distinguishable boundaries between’ (Suchman, p. 93). In a study of cardiac telemonitoring technology (specifically, an ambulatory ECG recorder), Oudshoorn (2008) explored this ‘articulation work’ (see Strauss, 1985) as practised by both patients and home care nurses, as the technology was embedded in the daily lives of cardiac patients. She pointed out that, although both groups were heavily involved in such articulation work, much of their work remained ‘invisible’ (Star and Strauss, 1999). Oudshoorn’s research usefully extends the study of invisible work from formal occupational contexts to wider everyday life—contexts where, one could argue, there is already a tendency for many ‘work’ tasks, particularly those typically performed by women, to be invisible. Net.Weight participants, too, engaged in articulation work. For instance, Kirstin was a confident user of ICTs when she joined Net.Weight and described her blog: It’s kind of about weight, and also ‘plus size’ clothes, because that’s been one of my main sort of things that kind of drove me mad when I was heavier, was finding clothes that fitted because it’s really difficult when you’re sort of . . . between like normal shops and sort of plus size clothes shops. We suggest that this practice can be understood as that of a health-e citizen. Kirstin had already identified herself as someone who was critical of the obesity discourse and its emphasis on diet and the BMI, and here she can be seen as attempting to intervene to meet the needs of others and their lived experience of being defined as ‘overweight’, using an internet-based tool to support her own self-defined health and lifestyle goals. She is clearly engaged in articulation work, attempting to make the technology ‘work’ for her and for others who identify with her

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I was very, very good initially, about updating it, but I’ve been really bad and I haven’t actually updated my blog now since last October, which I feel guilty about because I know there’s lot of people reading it and sort of accessing it. (Kirstin) Kirstin’s use of the terms ‘good’ and ‘bad’ to define her practice and the guilt she feels about not updating the blog suggest that she is still deeply caught up in the act of performing the ‘good’ subject in relation to self care and weight management. This raises an interesting question about the extent to which those engaged in self care are experiencing a new civic responsibility to incorporate new technologies into their self care practices, not simply to inform and care for themselves, but to support and care for others (see also, Adams Chapter 12, this volume). Overall, Net.Weight participants were positive about the potential of ICTs to support weight management but many were resistant to the simple ‘information as empowerment’ position found in dominant discourse. They remained adamant that information, however good or reliable, was not the solution to the complex problems of long-term weight management. Support and motivation, rather than information, was what most participants were seeking, and it was in this context that they were keen to explore the potential of new ICT tools. By engaging participants as designer-users, the Net.Weight workshops adopted a critical approach to the evaluation of ICTs for self care that led, among other things, to a set of design ideas for a web-supported, communityled approach to weight management.2 In our concluding section, below, we develop the notion of ‘engagement work’ that, we argue, reflects this critical approach and is a necessary prerequisite for the emergence of health-e citizens.

Intervening in the discourse of e-health: the need for more ‘engagement work’ In this chapter, we have argued that understanding e-health developments as ‘discourse’ is useful for understanding practices ‘on the ground’. It can help us realise that particular e-health tools, systems and ‘solutions’ reflect particular meanings and assumptions—about health,

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predicament. However, what is also interesting in Kirstin’s account is the pressure she clearly feels to continue to update her blog in support of others. When asked how often she updated the blog, she replied:

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about information and about technologies—and to see that different understandings and sociotechnical configurations are possible. By recognising the ways that discourses offer subject positions with which individuals can identify, this approach also helps to make sense of how and why individuals feel compelled to engage in particular ways with health information and with health information technologies. Such an approach can therefore also offer us a way of understanding use and non-use of technologies, resistances and rejections. Most importantly of all perhaps, the discourse approach enables us to identify where such resistance is active and knowing, as opposed to passive and fearful; where such resistances represent ‘disidentification’, rather than simply counter-identification, with the dominant discourse of e-health. As Davies (1989) argued: If we can see the way in which the discursive practices within a particular text or used by a speaker (including oneself) position us, the possibility of refusing that positioning, or even the discursive practice itself, and taking up another becomes more readily available. (Davies, 1989, p. 239) The Net.Weight project was based on the premise that it is not enough for academics simply to explore the dynamics of e-health. If we are using deconstructivist approaches to better understand how sociotechnical processes come into being and are maintained, resisted and/or re-shaped, then it follows that our interventions—whether into academic debate, policy making, practice/service or community development—must be what Webster (2007) calls ‘re-constructive’— seeking to reconstruct the sociotechnical in socially responsible, accountable and ‘knowing’ ways. The Net.Weight project was an attempt to do this by intervening at the community level. Through the mechanism of ‘participatory learning’, training in ICTs was replaced with learning about ICTs and the wider social context of their use. Workshop participants were not taught to access specific prescribed health information sites but to engage critically with local and global health information and communication resources, assessing their value in supporting their self-defined health goals. Thus, the workshops can be understood as offering a space for participants to become user–designers and potential co-designers of e-health support tools. To encourage greater engagement in e-health developments, it is important that individuals and communities are encouraged to participate in debates about them. We can think of this process as ‘engagement

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work’. This is different from ‘inclusion work’ (Rommes, 2002) because it is not simply about turning non-users into users of technologies, but rather about supporting current and potential users to become more critically engaged, and supporting informed and would-be informed patients to become health-e citizens. At its best, participatory learning can open the black box of technology and help keep it open. It can help participants to understand the discourse of e-health and how they/we, as subjects, are positioned within it, to consider how knowledge/power is produced within this discourse and articulate their/our own goals for health and well-being. It can also assist participants to understand where and how technology can be made to ‘work’ to support their goals (that is, to identify the necessary sociotechnical configurations), as well as to be prepared to posit alternative positions, goals and priorities, taking responsibility for the generation of necessarily partial, located or situated knowledge upon which such positions have been built. Such engagement with e-health discourse is, we would argue, a necessary prerequisite for the active, health-e citizen. Such engagement takes time and involves hard work but it can result in the kind of accountability that Suchman (2002) refers to as ‘located accountability’, and which Haraway (1991) refers to as a ‘view from somewhere’ (p. 190). It is an approach that has the potential to deliver not universal solutions and systems for the neo-liberal consumer–user or ‘informed patient’, but localised and user-centred systems and tools that reflect the needs of the active, critical and engaged ‘health-e citizens’ of the future.

Notes 1. The project’s formal title is ‘Supporting the self-management of obesity: The role of information and communication technologies’. It ran between January 2007 and July 2009 (Project Reference number: 0200057). See http://research.cmis.brighton.ac.uk/netweight/. 2. These design ideas will be the focus of subsequent papers emerging from the Net.Weight project.

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Working to be Healthy: Empowering Consumers or Citizens? Roma Harris, Nadine Wathen and Sally Wyatt

Our purpose in putting this book together has been to explore how, in the context of emerging socio-technical arrangements in the health care sector, policies and practices that emphasise personal responsibility for health are influencing the lives of ordinary citizens, as well as those who work in the health professions. How are new expectations about citizens’ ‘health roles’ being negotiated in everyday life and affecting what Bury (2001) calls the ‘moral narratives’ of health and illness? Contributors to this collection discuss how members of the public have come to be positioned as health ‘consumers’ and what this means for the distribution of health-related work. They provide various examples of the marketisation of health care and the technologies that are used to mediate or enable the everyday ‘healthwork’ of citizens. They examine the shifting meaning of health ‘expertise’ and describe the ways in which people comply with, alter or resist the health ‘jobs’ they are assigned or take on new, unassigned healthwork roles. In this chapter, we bring together these themes and consider their implications for health policy and practice.

The multiple meanings of empowerment In Chapter 2, Bella describes how health care systems have evolved in the UK, the US and Canada, and how, within these systems, health care marketising and importing of private sector management practices have been associated with the promotion of personal ‘empowerment’ in health. She explains, for example, that although feminists in the 1970s regarded ‘empowerment’ as a collective and political strategy intended to achieve social change that would improve women’s individual health 211

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as well as that of the broader community, the term ‘to empower’ is now often used in ways that emphasise individual, rather than collective, responsibility for health and well-being. In the following chapter, Veinot describes how this newer interpretation of empowerment is embedded in contemporary health policy discourses where it conceals agendas that not only encourage self-care and the need for individuals to keep themselves informed about health matters, but promotes these activities as civic obligations that will reduce the public’s reliance on state-supported health care. Central to health promotion policies that encourage personal responsibility for health is the idea that if people are provided with ‘good’ information they will be ‘empowered’ to make ‘good’ choices. ‘Informing’ is also central to the marketising of health wherein patients, as well as healthy citizens, are positioned as consumers of health care services and health-related products. Vendors of medical insurance, pharmaceuticals, specialty foods, exercise programmes, individualised genetic testing and a wide range of other services and products attempt, through various marketing strategies, especially involving the internet, to ‘inform’ potential customers about why they should choose their products. Canny consumers may elect to keep themselves (and their animals) healthy by purchasing nutritional supplements, energy drinks and exercise machines and by hiring instructors to learn new skills, such as animal ‘telepathy’ and ‘how to consciously create everything you desire in life’. They are also encouraged either to volunteer or to make money by marketing these products to others, often through online gimmicks reminiscent of pyramid sales schemes. People who are ill are also encouraged to ‘choose’ their way to better health ‘through empowerment’, by creating a personal health record or purchasing the services of ‘coaches’ who claim to teach their clients, including those with serious, chronic illnesses, how to ‘attract greater health’. That there is little, if any, evidence to support links between ‘health’ and many of these products, services and schemes (and even empowerment itself) appears to be no barrier to the promotion of these ‘opportunities’. The language of empowerment also permeates a litany of healthy ‘choice’ messages from governments, health agencies and health care professionals that urge the public to avoid risky behaviours and engage in healthy practices. For example, the mandate of the Province of Ontario’s Ministry of Health Promotion is to encourage citizens ‘to make healthier choices at all ages and stages of life . . . and assist in embedding behaviours that promote health’ (Ontario Ministry of Health Promotion, 2009). Beneath photographs of a leaping skateboarder and

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boxes full of fresh vegetables and fruit, the Ministry’s home page headlines ‘Ontario’s Action Plan for Healthy Eating and Active Living’ that is intended to ‘empower individual and collective action to create a healthier culture’ (Ontario Ministry of Health Promotion, 2006, p. 8). The US Department of Health and Human Services showcases on its website ‘Personal Health Tools’ including ‘Online Checkups’, ‘Activity and Menu Planners’ and ‘Health Calculators’ (to estimate, for example, body mass index, calorie intake, target heart rate). Likewise, a banner on the home page of the UK’s National Health Service web portal, NHS Direct, proclaims ‘Your Health, Your Choices’ and highlights a ‘Live Well’ programme featuring topics such as ‘Fitness’, ‘Good Food’ and ‘Lose Weight’. Similar messaging infuses health care practice. In dietetics, for example, Gingras and Aphramor (Chapter 6) argue that such ‘informing’ activities do not actually empower by supporting patient choice but instead reflect a thinly disguised compliance agenda in which patients are urged to ‘choose’ to shed their ‘unhealthy’ habits and replace them with behaviours recommended by nutritional experts. Negotiating the messages associated with achieving a ‘healthy lifestyle’ can be a challenge. Not only is it often difficult to make sense of all the information available, some of which offers not only complicated but conflicting advice, but acting on the information assumes a level of control over one’s environment that is not always realistic (Kivits, 2009).

The imperative to be healthy When health is depoliticised and constructed as a private, personal responsibility and a matter of consumer choice, collective attention is diverted away from health threats posed by social and environmental conditions, such as poverty and pollution, which require remedies beyond the responses of single individuals. Positioning the state of ‘being healthy’ as a ‘choice’ also implies that illness is something that can be avoided by the responsible behaviour of ‘good’ citizens. In Chapter 3, Veinot describes the potential for victim blaming that accompanies the language of managerial efficiency when it comes to health. For instance, people with chronic illnesses are increasingly described in terms of the ‘burden’ they place on the health system and, more broadly, on society, and are therefore encouraged, through schemes such as the UK’s Expert Patient Programme, to engage in self-care practices to make themselves less ‘burdensome’. This theme

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People with dementia are not the only ones affected by the disease. Dementia places a long-term progressive burden on those who care for them. Dementia usually implies not only a long period of profound disability and suffering for the person, but also severe strain on family and caregivers, health providers, the health care system, the business community, and society in general. (2010, p. 10) The report predicts a great rise in the number of hours of work the dementia ‘epidemic’ will require of informal caregivers, focuses heavily on the ‘economic burden’ of the disease and recommends investment not only in further research but on ‘prevention’, particularly as it relates to healthy lifestyle and risk avoidance. As Veinot points out, these types of arguments, based on economic grounds, mean that chronic illness is a policy problem. Of course it makes sense to encourage people to live their lives as fully and happily as possible, but a darker side of healthy living messages is the underlying implication that those who are unhealthy lack will power and are lazy, selfish and/or anti-social. When disease or ill health is not attributed to personal failings, the tone of the discourse shifts to suggest that the affected person ought to, at least, strive for health and, as Goldenberg (Chapter 10) discusses, put on a pink ribbon and a brave face and work on behalf of others ‘for the cure’. From this perspective, patients (like Mary in Chapter 1) who desire care and support, wish to rest without responding to the demands of others or want the professionals who attend to them to take the lead by giving advice or making decisions are letting down the side and ‘failing’ to follow the script by not working harder and attempting to control the events that have overtaken their bodies. Mol argues that ‘mobilising the logic of choice can lead to poor care. It can shift the weight of everything that goes wrong onto the shoulders of the patient-chooser’ (Mol, 2008, p. xii). She recommends, instead, a civic approach to health that is less focused on encouraging prescribed choice-making for individuals but rather emphasises a collective approach to improving the environment for health. Drawing on nineteenth century public health efforts, she points out, for example, that sewage systems were built, and health and safety standards were devised and monitored to improve food quality and working

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is evident in the following passage from a recent report from the Alzheimer’s Society of Canada:

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conditions. She suggests that similar investments today in neighbourhoods and agriculture would do more to promote good health than simply admonishing people to exercise their bodies and their will power.

An important feature of strategies that focus on individual responsibility rather than collective strategies for improving health is a growing emphasis on self-care. Teghtsoonian (2009) describes the thinking behind the push for self-care in health policy as the construction of ‘good citizens who take responsibility for making choices that do not burden the health care system with inappropriate requests for costly and unnecessary services’ (p. 31, our emphasis) and who cultivate ‘appropriate knowledge and skills’ to ‘reduce the level of need for services’ (p. 32); a process she describes as ‘responsibilization’. Elsewhere, one of us (Harris, 2009) argues that the use of the term ‘self’ care to describe this process is problematic as it disguises the unpaid care work that women provide to support the health of family members and others in their social networks. Underpinning the idea of ‘responsibilization’ and ‘self’ care (no matter who actually performs it) is the obligation for citizens to keep themselves informed about health matters. However, as Bakardjieva explains in Chapter 11, as more people assume this responsibility there is an accompanying shift in the terrain of medical or health-related ‘expertise’. Wilcox (Chapter 4) discusses the meaning of this shift and its parameters. Although there are those who argue that, by definition, a lay person cannot be an ‘expert’, it is obvious nevertheless that as patients and citizens in non-patient (lay) roles claim knowledge in territories formerly exclusive to medical professionals, there will be an inevitable struggle over how that knowledge is to be interpreted and used. For instance, Weisgerber (Chapter 7) describes how people who experience sleep paralysis may contest medical claims about the origin and meaning of their disorder, enabled by the anonymity of an online discussion forum. Even when patients choose service providers whose style of professional practice explicitly assumes an egalitarian model of health care delivery, expert knowledge is negotiated, contested, disputed and ‘managed’ in patient/provider interactions; this is discussed by Spoel (Chapter 5) in relation to health care decision-making in midwifery. Lay people now regularly pull at the edges of professional turf, not only because ‘they can’, as a result of endless internet-enabled opportunities

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to self-diagnose and self-treat, but because they are expected to as a result of health promotion policies that promote the agenda of personal responsibility. Understandably, professional providers may be alarmed by such incursions. Not only are ‘informed’ health consumers laying claim to portions of the expert knowledge base, but health system administrators, too, are increasingly constraining (and some would argue, deskilling) professional practice by imposing new requirements, such as routinised approaches to diagnosis, treatment and reporting, that limit practitioners’ ability to apply their expert knowledge as they see fit.

‘Patient-centredness’ Part and parcel of discussions of empowerment, self-care and clinical and patient roles is the concept of ‘patient-centredness’. In its original incarnation, ‘patient-centred medicine’ was a way to address the following concern: In our view, the conventional models and methods of medicine and medical education have failed us, to some extent, in that they are incomplete and too narrow. The conventional biomedical approach ignores the person with the disease. To redress the balance, we suggest a revised model of medicine and medical education that includes the conventional biomedical approach, but also goes beyond it to include consideration of the patient as a person. We call this the ‘patientcentered model’. (Stewart et al., 1995, p. xv) The original goals of patient-centred care were therefore quite modest, and very specifically focused on helping clinicians recognise their patients as real people, living messy lives. The model was developed by Stewart and colleagues as a method of practice located in medical education—that is, a set of skills and techniques to be taught to new family doctors in medical schools and residency programmes, and to practising family doctors using continuing medical education modules. Salmon (Chapter 9) provides a useful critique of the intended and unintended impacts of the devolution of ‘patient-centredness’ to a focus on communication skills training methods and attempts to standardise patient–provider interactions. In a comprehensive review of the literature in the area, Mead and Bower (2000) identified five generally recognised ‘dimensions’ to patient-centredness: ‘biopsychosocial

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perspective’; ‘patient-as-person’; ‘sharing power and responsibility’; ‘the therapeutic alliance’; and ‘doctor-as-person’. These are well-aligned with the original goals of Stewart and her colleagues. Where the trouble starts, however, is in the expanding scope of ‘sharing power and responsibility’. As the discourses of empowerment, self-care, and patient education started to catch on, increasingly complex and technologically oriented tools and interventions were developed to support processes putatively designed to increase patient-centredness. From relatively simple guidelines to computer-assisted ‘decision-aids’ to support ‘shared decisionmaking’, a plethora of tools have been created and evaluated. Over the 10 years between an initial systematic evidence review examining the effectiveness of such aids (O’Connor et al., 1999), and an updated version (O’Connor et al., 2009), numerous studies reveal that decision aids are no more effective than either ‘usual care’ or other forms of communicating with patients in improving decision-making, patient anxiety or health outcomes, although these aids do seem to help patients avoid procedures that have low likelihood of improving their health, or may be harmful (e.g., hormone replacement therapy and prostate cancer screening). The progression from simple, relatively inexpensive ways to ‘be patient-centred’, such as having a discussion with a patient, to more technologically mediated methods, is also evident elsewhere. This ranges from the professional communication coaches described by Salmon (Chapter 9), to potentially far more costly systems. For example, in their discussion of the importance of patientcentred medicine (PCM), the American Diabetes Association’s newsletter DOCNews includes ‘same day appointments’ as an indicator of patientcentredness, along with staff ‘hire[d] for personality’, and also suggests that electronic medical records can enhance patient-centred medicine by providing ‘a better idea of a practice’s population so it can develop programs for all patients with diabetes’ noting that ‘[b]asic teaching on heart risk factors for patients with high cholesterol is the same whether directed towards one person or ten. Providing this information to a number of people at the same time, with individual follow-up for questions and additional teaching, is both effective and patientcentered’ (Ullman, 2006). These and other suggestions for PCM practice for diabetes clinicians come from survey research conducted by the vice president for quality improvement at the Commonwealth Fund in New York City (an organisation that describes itself as ‘a private foundation that aims to promote a high performing health care system that achieves better access, improved quality, and greater efficiency’), and published

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in the Annals of Internal Medicine. Some of these tenets, for example, ‘maintaining respect for patient values’, ‘offering emotional support’, ‘encouraging patients to take the lead in deciding whom they want to be involved in their care’, are consistent with the original goals outlined by Stewart et al., however others, such as ‘ensuring continuity of care and security of transition between health care settings, so that all who interact with the patient have the information to appropriately treat the patient and to avoid mistakes such as duplication of services and interactions between multiple medications’ clearly adopt the language used by vendors of electronic medical records (for example, Bates et al., 2003, among many). These are but a few examples of how sensible ideas, such as seeing patients as whole persons, being nice to them and allowing them some say in their care, have been appropriated by a range of interests in the service of goals well outside the context of patient care and improved health and well-being.

Informing oneself and others: a new health imperative Within a political context that emphasises individualism, personal duty and consumerism, health discourses of ‘patient-centredness’ and ‘empowerment’ enrol health educators and researchers in a system in which patients take on the responsibility and work entailed in managing their illness (Salmon, Chapter 9). This alignment reflects, in part, the import of new public management practices into health care administration (see Bella, Chapter 2). One of the many paradoxes in the emerging relations between health policy, the design of care systems and citizen response is that the ‘get healthy’ messages people receive and the ‘informing’ work they perform do not always lead to the behaviour anticipated by policy makers and health professionals. For instance, health care policy makers appear to assume that the desired outcomes, including patient satisfaction and compliance with treatment, simply follow patient-centred behaviour on the part of providers, reflecting what Mead and Bower (2000) describe as the ‘drug metaphor’. This metaphor also extends to the anticipated effects of patient education. It is assumed that information transferred to lay persons by medical experts will be used by its recipients as a sort of ‘prescription’ by which they will be ‘empowered’ to act upon (and comply with) whatever they have been directed to do. Ironically, the very technologies that enable the marketising of health and the positioning of health care recipients as consumers are the ones that also make it possible for citizens to resist or reinterpret the information or advice they are given. As Brown (2008)

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explains, ‘the advent of the Internet and subsequent globalisation of medical knowledge [led] to the rise of the increasingly clever patient, who is able to source and interpret medical information independently of his or her doctor’ with the result that ‘members of the public are less dependent on custom and traditional professional relationships and interpret the information offered to them by an increasingly globalised world’ (p. 273). Contributors to this volume make some important observations about the ways in which ICTs afford citizens the opportunity not only to learn about and maintain their health, but to appropriate and, in some instances, manipulate aspects of the health policy agenda to their own and others’ advantage. For instance, Bakardjieva (Chapter 11) describes how citizens use the internet to ‘domesticate’ medical knowledge. At their simplest, such methods involve extracting from internet searches medical ‘recipes’ to address and solve problems without questioning the expertise behind the advice—a process Bakardjieva calls ‘bandaid use’. Sometimes, health information seekers are looking to learn about or become more ‘literate’ with respect to a particular problem or condition. Here again, the intent is not to challenge medical expertise, but to understand a problem well enough to engage in a meaningful exchange with a health care provider. A much more complex process of negotiation is in play, however, when health information seekers are looking to educate themselves about a problem at a level that enables them to participate actively in the health system and affords them a sense of expertise vis-á-vis medical practitioners, not only in terms of treatment decision-making but, in some cases, to actually source new approaches to treatment and engage other citizens in a process of political work and advocacy. This latter approach fits Schutz’ (1964) description of the ‘well-informed citizen’ and that of the engaged and ‘disidentified’ ‘health-e’ citizen described by Henwood et al. in Chapter 13. It is also consistent with the version of empowerment pursued by second wave feminists described by Bella (Chapter 2). With the increased availability of medical information online and the ease of sharing such information across vast networks of healthinterested people, ordinary citizens have, more than ever, the opportunity to take on more in-depth informing work for themselves and on behalf of others (a blessing or curse, depending on one’s point of view, see Harris, 2009). Inevitably, however, this role also means a realignment of the work, skill and social positioning of other actors in the health care system, particularly medical professionals. In Chapter 4, Wilcox describes how self-educated AIDS treatment activists and people with Repetitive Strain Injury acquired specialised medical knowledge

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and used it to influence the development of ‘legitimate, authorised knowledge’ about their contested medical conditions. Although their efforts are less dramatic, some of the participants in the Net.Weight project described by Henwood et al. (Chapter 13) also challenged and resisted dominant medical discourses about weight and sought ways to use ICTs to provide support and motivation to others. Importantly, in these examples, lay health ‘experts’ chose to take on their informing and care activities. However, this very civic-mindedness and willingness to volunteer to help others is being appropriated to serve the interests of governments, health agencies and e-health entrepreneurs. Not only are citizens expected to be responsible for their own health and self-care but, increasingly, as Adams explains in Chapter 12, they are called upon to share their views, experiences and even personal medical/health data on online sites where it can be processed by a range of interested actors. Even people who are coping with serious illnesses are targeted as potential contributors. When performing these helpful roles, good citizens are not only expected to model a ‘healthy’ optimism about the future, but to carry a message that supports a top-down agenda about responsibility for health. For example, Veinot (Chapter 3) describes how people with chronic illnesses are recruited to the UK’s EPP as ‘volunteer’ tutors to teach others a set of skills that are intended to ‘empower’ them to take responsibility for managing their own conditions. And, in Chapter 10, Goldenberg describes how women with breast cancer are expected to participate, almost like cheerleaders, in community ‘pink ribbon’ events, such as runs ‘for the cure’. According to Goldenberg, women who fail to embrace the ‘hero-narrative’ script reflected in these events, who express anger rather than gratitude about their disease or who challenge the prevailing discourses about its causes are silenced and rebuked. Online contributions by health-interested citizens comprise yet another form of work that, as Adams (Chapter 12) explains, is not so much ‘chosen’ as ‘obliged’. As civic duty, it is unpaid, even though others may benefit financially from this labour, particularly corporations that use the data gathered through crowd sourcing techniques to assess and direct the management of health systems, as well as those who, as Wilcox points out in Chapter 4, assume a new set of paid work roles involving the gathering, tabulation and reporting of the information supplied by volunteer contributors. Citizen producers of health data may also perform unintended roles when the questions to which they respond in online surveys frame their experiences in ways that emphasise issues and concerns that may be of greater interest

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to the data gatherers than their contributors. Their responses may be used, for instance, to conduct what Adams describes as ‘sous-veillance’ about service providers. If the creators of data capture websites focus their inquiries on specific indicators of service performance, they set the agenda about what is important about these services, thereby engaging data contributors to become, essentially, spies. In this respect, the presence of these systems can alter the power relationships between patients and their health care providers. Indeed, some practitioners are so concerned about the potential of these tools to undermine their credibility they require patients to sign contracts in which they agree not to post negative comments about them on physician rating websites. We see, then, that at the same time that such technologies offer new opportunities for citizens to participate in and, hopefully, influence in a positive way the shape of health care services, they may also disrupt the trusting relationships that patients and providers need to develop to facilitate care.

Creating the conditions for care How can the benefits of greater citizen participation in health care be reconciled with the greater use of ICTs, given their potential to erode trust between care givers and care providers? One way may be to look carefully at the agendas of the ‘enablers’. As discussed throughout this book, neo-liberal discourses of health emphasise personal responsibility for health that is to be achieved by positioning citizens as consumers who are empowered by information, as a result of which they are expected to choose their way to good health through the acquisition of health knowledge or expertise that enables health-facilitative behaviours. Even if they are ill, as informed consumers patients are expected to work in partnership with health professionals (who may be constrained in their interactions by the assigned scripts they are to follow or by the indicators they are to achieve) to decide among treatment options and, over the long term, to manage their condition through self-care. Not only does this model imply, none too subtly, a significant offloading of informing and care work from collectively supported health systems onto the shoulders of ordinary citizens, but as discussed earlier in this chapter, it supports the blaming of people who have ‘failed’ to be healthy or who are unhappy that they are ill or who want their professional care givers to be responsible for significant treatment decisions. There is nothing wrong with offering people reliable information about

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Working to be Healthy

their health, encouraging people to keep themselves as healthy as possible, or helping them to find ways to make improvements in their lives and the health of their communities. Nor are we arguing that there is anything wrong with supporting people to take an active role in their own health by being informed. Rather, we are trying to assess what it means when such sensible and worthwhile ideas are moulded, reshaped or re-cast to support other ideas and agendas that may not necessarily have been designed or developed in the interests of patients or ordinary citizens. Salander and Moynihan (Chapter 8) argue that recognising that information giving is not the same as a relationship of trust with a care provider does not mean accepting paternalistic relationships of care. Similarly, identifying the problems associated with treating patients as consumers does not imply that patients should be treated as passive and grateful recipients of health services. Mol (2008) has developed an effective critique of the ‘logic of choice’ which assumes not only that ‘patients are called upon to manage their doctors’ but, more fundamentally, that in having a choice ‘one is responsible for what follows’. She argues instead for a ‘logic of care’ in which there is ‘a different way of opening up the monopoly of professional groups over expertise’ and calls on us to ‘somehow, share the doctoring. Let us experiment, experience and tinker together—practically’ (p. 65). For Mol, such an approach ‘does not impose guilt, but calls for tenacity. For a sticky combination of adaptability and perseverance’ (p. 91). In the final section of this chapter, we offer some suggestions about how to move toward this ‘sticky combination’.

Looking to the future Henwood and her colleagues (Chapter 13) throw down the gauntlet with their reminder that in studying the processes discussed in this book, as activists, scholars and practitioners, we all have an obligation to see that our ‘interventions’, whether in ‘academic debate’, ‘policy making’ or service are ‘re-constructive’. Our response to this challenge is to clarify what we mean by ‘care’ and what is missing in current constructions of health(y) citizenship. Like Mol, we believe that formulaic practices in which the health ‘care’ relationship is positioned in a way that places the burden of responsibility for ‘choosing’ on individual patients miss the mark in terms of what most people really want from their health care systems. We question, for instance, whether people can truly experience care or real choice when, in an effort to keep costs down and profits up, they are manipulated

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into accepting roles, behaviours and responsibilities that are not inherently reasonable or achievable. As a result, we reject the idea that citizens should be personally responsible for health and self-care if it means that there is no corresponding collective responsibility to ensure both access to needed ‘expert’ care and ongoing work to improve the social and environmental conditions that contribute to ill-health. On the other hand, we acknowledge the need for the courageous ‘health work’ people do every day to care for themselves and others, including the effort people with serious health conditions often make just to keep themselves ‘together’. In saying this, however, we do not accept that sick people should be blamed for their lack of health or that it is reasonable to suggest that ‘health’ is something over which both well and sick people have control. Informed, active health(y) citizenship means balancing self-care with caregiving. Like the contributors to this collection, we believe that a health(y) care system supports enterprising lay health information seekers to educate themselves through means such as online health information resources and also respects the knowledge these seekers acquire when they bring their experience and expertise to consultations with their health care providers. We also believe that a health(y) care system gives users opportunities to provide feedback about their experiences and their desires for system improvements, as well as meaningful ways to shape future health initiatives. Most importantly, however, we believe that a health(y) care system balances self-care with caregiving that goes beyond providing information and involves relationships that provide warmth, expressions of concern and time to listen (all of which are repeatedly identified in studies of help seeking as essential ingredients to effective practice and information exchange, see Wathen et al., 2008). As Henman et al. (2002) reported in a study of women with cancer, when women felt that their doctor ‘cared for, understood and respected them’, ‘that they could trust and have confidence in the doctor’, ‘that the doctor would give them enough time’, ‘that they would be listened to; and that the doctor would be open and honest’, ‘many were happy to accept the doctor’s recommendation, confident that they would receive the optimum treatment’ (p. 295). To us, the relationship Henman et al. describe—and what is reflected in Stewart et al.’s initial conceptualisation of patient-centred care—is what good care is all about. In contrast, ‘bad care’ is when: people are being neglected. When physical parameters are isolated from their context; when patients’ daily lives are not taken into consideration. When patients are left to their own devices and have to

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Roma Harris, Nadine Wathen and Sally Wyatt

Working to be Healthy

face the complex (and sometimes impossible) tasks of combining the divergent instructions given to them by different specialists. When professionals fail to carry out careful experiments, but hastily follow protocols instead or, - even worse - lazily fall back on old habits . . . care is bad when the measurement of a few discrete parameters displaces attention from the sometimes painful and always complicated intricacies of day-to-day life with a disease. (Mol, p. 97) In sum, people have a right to support and care from their health providers. Despite the challenges of financing public health care, the strains experienced, even by the most well-behaved and compliant of citizens, must be recognised and ways found to maintain a system that does not expect people to do all the work themselves—a system in which it is recognised that information, by itself, is not enough and, as a consequence, respects those who wish to rely on the expertise of their care providers. Fundamentally, we argue that our collectively held health systems should enable a form of ‘empowerment’ that is reminiscent of what 1970s feminists envisioned; not one in which people are left to struggle alone to maintain or achieve health, but in which people support one another, using the technologies available, to learn about, act upon and engage with others to live healthy lives and, when ill, receive necessary care. For those policy makers (and others) who require some evidence to decide whether specific interventions or other health system policies and practices are justified, we cite the analysis of Greenhalgh, who in her examination of myriad systematic reviews and meta-analyses of the vast literature about self-management, patient empowerment, community empowerment and illness narrative concludes: [s]elf management programmes based on the expert patient model remain the preferred policy in many countries, but the evidence base for their efficacy is weak. It is time to move beyond them and embrace richer, more holistic models which consider a person’s family, social and political context. (Greenhalgh, 2009, p. 631) We agree. It is indeed time to move on—together.

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Abbot, J., 96 Abrams, J., 180 Adams, S. A., 14, 167–8, 178–93 Adolfsson, E. T., 86 Ahmad, F., 176 Airhihenbuwa, C. O., 85 Akrich, M., 189–90 Alajouanine, T., 105 Aldridge, A., 67–8 Alison, D., 118 Allegmang, J., 152 Allen, M., 191 Allsop, J., 187 Angier, N., 151 Annandale, E., 117, 120 Antonijevic, S., 4 Aphramor, L., 8, 59, 68, 74, 82–93, 132, 201, 213 Apthorpe, R., 37 Arksey, H., 46–7, 50–2, 61 Armstrong, D., 116–17 Armstrong, P., 14 Asimakopoulou, K. G., 85, 90 Atkins, J., 92 Audrey, M., 194–210 Auerbach, S. M., 90 Aujoulat, I., 118 Bacon, L., 90 Badcott, D., 31 Baggott, R., 13, 15, 20, 22, 28 Baines, J., 159 Bakardjieva, M., 10, 28, 56, 98, 107, 163–77, 200, 205, 215, 219 Baker, M., 39, 163 Bakhtin, M. M., 170 Balint, M., 134 Barbot, J., 186, 189 Barrow, R., 138 Bates, D. W., 218 Batt, S., 153 Beachamp, T., 117

Beck, U., 185, 190 Bella, L., 7, 13–31, 34, 36, 66, 86, 131, 143, 152, 161, 176, 181, 191, 198, 211, 218–19 Bennett, J. M., 118 Berg, M., 206 Beveridge, H., 16 Bijker, W., 206 Birnsteel, L., 180, 190 Blackmore, S. J., 99 Bont, A. A. de 14, 189, 192 Bonvicini, K. A., 137 Booth, A., 27 Bower, P., 216, 218 Bowlby, J., 124 Brabham, D. C., 179 Brady, J., 89 Brennan, J., 120, 124 Broom, A., 134, 180 Brown, J., 99, 108, 129, 134–5, 218 Brown, P., 61 Brunett, P. H., 130, 133 Bunton, R., 35–6, 154 Burke, K., 69, 78 Burrows, R., 198 Bury, M., 22, 211 Butler, J., 172 Buzzi, G., 96 Callaghan, G. D., 180, 182 Campbell, T. L., 39 Campos, P., 90, 200 Carey, D., 19–21 Carlin, L., 194–210 Carlson, L. E., 122 Carpenter, D. R., 99 Cassileth, B., 118, 119 Cheek, J., 31 Cheyne, J. A., 96–100, 107 Chiong, W., 98 Choo, C. W., 86 Chowdhury, N., 33–5 256

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

Copyright material from www.palgraveconnect.com - licensed to Universitetsbiblioteket i Tromso - PalgraveConnect - 2011-03-19

Author Index

Author Index

Daniels, L. E., 97 Davies, B., 84, 91–3, 121, 209 Davies, N. J., 121 Davison, B., 120 Day, P., 180 Decter, M. B., 30 Degner, L., 120 Degner, L. F., 127 DeVault, M. L., 87, 91–2 Dibben, M., 86 Donaldson, J., 148 Downie, R., 127 Duesberg, P., 151 Duffy, F. D., 131 DuPois, M., 89 Earl, L., 163 Eberhardt, T. L., 122 Edgar, A., 31 Egger, G., 201 Ehrenreich, B., 142, 144–5, 147, 149, 154 Eisenstein, Z., 154 Ekpe, H. I., 87 Entwistle, V. A., 132 Epstein, R. M., 47, 51, 61, 128–31, 138 Epstein, S., 46 Evans, R., 21, 49, 51, 55, 59 Evans, J., 200–1

Evans, R. G., 33 Everett, H. C., 96 Fadem, P., 62 Faden, R., 117 Fallowfield, L., 118, 120, 135 Farson, R., 139 Feldman-Stewart, D., 119 Finestone, H. M., 138 Finset, A., 133 Ford, S., 131, 133 Fortunati, L., 4 Foucault, M., 30–2, 113, 116, 191, 205 Fox, N., 39, 163, 167, 172, 175–6, 181 Fox, S., 94, 95 Fragstein, M. von, 129–31, 133 Frank, A., 146, 148–50 Frank, J. B., 114–15 Frank, J. D., 114–15 Frankl, V., 114 Freund, P., 86 Fukuda, K., 96 Funnell, M. M., 86 Gable, J., 85 Gaesser, G., 90 Gann, B., 196 Gannon, S., 91–3 Gard, M., 88, 90 Giddens, A., 53, 166, 180–1, 189, 191 Gill, R., 4 Gillin, P., 94 Gingras, J. R., 8, 59, 68, 74, 82–93, 132, 201, 213 Goldenberg, M., 9, 140–59 Goldman, K. D., 179 Gordon, C., 31 Gouldner, A. W., 188, 190 Grace, C., 88 Graugaard, P. K., 133 Gray, A., 181 Greener, I., 182 Greener, M., 39 Greenhalgh, T., 224 Grossman, L., 94 Guthman, J., 89, 92 Guy, E. S., 194–210 Gwyn, R., 68

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Cirignotta, F., 96 Clark, J., 120 Clarke, S., 159, 181–2 Clayton, J. M., 127 Clayton, J., 124 Cochrane, A., 117 Coile, R., 26 Coleman, R., 179, 182 Collins, H. M., 49, 51, 55, 58–9 Conesa, J., 99 Conter, D. B., 138 Cooper, J., 39 Corbin, J., 99 Corburn, J., 61 Cordella, A., 181 Cornford, T., 181, 185 Coulter, A., 30, 122 Cox, A., 121 Crawford, R., 117, 191

257

Author Index

Hack, T. F., 133 Haddon, L., 164 Haes, H. de, 131 Hagerty, R. G., 124 Hall, G. M., 39, 113, 117, 122, 132, 134 Hall, J. A., 130 Hamowy, R., 15, 18, 21 Haraway, D. J., 91, 203, 210 Hardey, M., 30, 163, 167, 179, 181 Hardt, M., 3 Hargittai, E., 190 Harris, R., 1–10, 14, 28, 31, 35–6, 211–24 Harrison, S., 180–1 Hart, A., 206 Hartswood, M. J., 206 Have, P. ten, 120 Hawkes, N., 37 Henderson, S., 198 Henman, M. J., 128, 133, 223 Henriksson, R., 2, 122–3, 127–8 Henwood, F., 10, 67–8, 164, 167, 175, 177, 181, 194–210 Heritage, J., 75 Herndl, D. P., 148 Herring, S. C., 178 Himmelstein, D., 22 Hirji, F., 163–4 Hirschman, A. O., 182 Holmes, O. W., 116 Hook, D., 31 Hosty, G., 96 Huba, J., 94 Hufford, D. J., 96–9 Hulsman, R. L., 128, 131, 136 Hunt, M., 148 Hunter, D., 14, 20, 22, 28, 152 Hydén, L. C., 120 Ikeda, J., 88 Ingelfinger, F. J., 118–19, 135 Israel, S., 179 Jager, S., 32 Jain, A., 88 James, S., 65, 67, 104 Janeka, I. P., 151 Jasanoff, S., 51

Jefford, M., 133 Jenkins, V., 118, 126, 133, 135 Jewson, N., 116–17 Johnson, J. L., 98 Jones, E., 97 Jones, K., 187 Kaplowitz, S. A., 119 Katz, S. B., 69–70 Keelan, J., 57 Kemper, D., 3 Kendall, E., 198 Kendall, G., 31 Kendell, R. E., 107 Kennedy, A., 87 Kennedy, J. F., 18 Kennedy, L. A., 198 Kent, G., 86 Kerr, A., 47–8, 51, 54 Kielser, D. J., 90 Kim, E. H., 152 King, S., 142, 144–5, 149, 152, 156–7 Kinmonth, A. L., 133 Kirk, I., 127 Kirk, P., 127 Kivits, J., 34–5, 164, 167, 171, 176, 213 Klawiter, M., 159 Klecun-Dabrowska, E., 181, 185 Klein, R., 37 Kleinman, A., 138, 147 Koedoot, N., 131 Kristof, N. D., 96 Kuhlman, E., 180 Kutner, J. S., 127 Labonte, R., 23, 31 Lammes, F. B., 245 Lane, K., 68 Larson, E. B., 138 Lash, S., 188–9, 204 Latour, B., 175, 206 Lawton, J., 60 Lean, M., 86 Leopold, E., 151, 158 Lerner, B., 143 Lewin, S. A., 131 Leydon, G. M., 119, 124, 127–8 Liddon, S. C., 96–7 Lilliehorn, S., 124

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Lippman, A., 68, 73 Liquori, T., 83, 91 Lorde, A., 145–6, 159 Lorig, K., 37–9 Luckman, T., 165–6 Lupton, D., 34–5, 67–9, 75–6, 197 Lutfey, K., 119 MacNair, T., 38 Magee, H., 30 Maguire, P., 120 Maioni, A., 17 Mann, T., 88 Marques-Bonham, S., 107 Marshall, A. M., 194–210 Marshall, E., 143 Marx, K., 3 Mavromates, A., 96–7 Maynard, D. W., 119–20 McConnell, B., 94 McCoy, L., 35, 141 McGuire, M., 86 McIntosh, S., 179 McKendry, R., 32 McKenzie, P., 69 McKeown, L., 175 McKeown, T., 117 McNeil, D. G., 53 Mead, N., 216, 218 Meredith, C., 126, 133 Mesley, W., 147, 150, 155 Mesman, J., 4 Mettler, M., 3 Mick, B. A., 98, 107 Miller, C., 69–70 Miller, S., 115 Mishler, E. G., 120 Mitchell, S. W., 97 Mol, A., 5, 214, 222, 224 Monaghan, L., 90 Moore, P. M., 121 Morgan, M., 90 Morris, L. A., 114 Morse, J. M., 98 Mort, M., 4 Mossberger, K., 181 Moynihan, C., 9, 67, 113–25, 127, 132–3, 148, 157, 222 Mykhalovskiy, E., 35–6, 141

259

Naiditch, M., 181, 186, 188 Naylor, D., 16–17 Negri, A., 3 Nettleton, S., 35–6, 95, 107–8, 154, 164, 167, 175 Newman, J., 180 Nielsen, D., 86 Nielsen, W., 86 Novack, D. H., 117 O’Brien, M. A., 132 O’Connor, A. M., 217 O’Rourke, M., 120 Obama, B., 19, 29, 192 Ochoa, Camacho, A., 85 Odette, B., 21 Ogden, J., 133 Ohaeri, J. U., 96, 99–101 Ohayon, M. M., 96–100 Oliphant, T., 69 Oliver, E., 116 Olsson, C., 86 Onel, E., 119 Ong, L. M. L., 131, 133 Orgad, S., 164 Oudshoorn, N., 2, 4, 206–7 Paradis, C. M., 96, 100 Parker, J. D., 99 Parker, P. A., 122–3 Parloff, M. B., 114 Parsons, T., 163, 174 Pecheux, M., 199 Perakyla, A., 119, 123 Petersen, A., 67–8, 198 Pezzullo, P. C., 148, 155, 157 Pinch, T., 206 Pitts, V., 179, 185, 192 Plum, A., 131, 135–7, 139 Pollock, A. M., 7, 20–2 Powers, P., 86 Powles, J., 117 Prior, L., 3, 45, 49–50, 52, 59 Provencher, V., 90 Ptacek, J. T., 122 Randall, F., 127 Rankin, N., 133 Rapp, R., 140

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Author Index

Author Index

Reardon, J., 62 Rebick, J., 68 Repko, R., 117 Ringash, J., 153, 159 Rodmell, S., 2 Rogers, A., 198 Rogers, R., 180–1 Rollin, B., 145 Rommes, E., 210 Rose, N., 40–1 Roter, D. L., 130 Rothman, B. K., 154 Rushing, B., 66 Rutten, L. J. F., 121 Salander, P., 2, 9, 67, 113–25, 127–8, 132–3, 148, 157, 222 Salmon, P., 2, 9, 24, 35, 39, 65, 68, 71, 80, 86, 113, 117–22, 126–37, 216–18 Sanders, T., 163 Saquib, N., 88 Say, R., 127 Scheper-Hughes, N., 57 Schirmer, J. M., 131 Schmalz, K. J., 179 Schmidt, K., 4 Schryer, C. F., 69 Schuler, D., 180 Schutz, A., 54, 56, 58, 164–6, 168, 171, 174, 200, 219 Scoble, R., 179 Sears, A., 14 Seery, P., 98 Sefi, S., 75 Segal, J. Z., 70, 146, 148, 152, 154 Shapin, S., 52, 54 Shapiro, A. K., 114 Shaw, I., 67–8 Shaw, J., 39, 163 Sherwin, S., 68, 154 Silverstone, R., 164 Simon, C., 4 Singleton, V., 34, 185, 192 Skelton, J. R., 120, 133 Slevin, J., 188–91 Sloan, J. A., 127 Smith, H., 194–210

Smith-Warner, S. A., 152, 159 Spoel, P., 8, 65–81, 95, 117, 121, 128, 215 Stacey, J., 146–51 Star, L. S., 4 Starr, P., 95 Steele, D. J., 128 Steingraber, S., 154–5 Stephen, A. M., 89 Stevens, S., 36 Stewart, M., 131–2, 216–18, 223 Strauss, A., 4–5, 99, 207 Street, Jr, R. L., 126 Street, R. L. J., 129 Suchman, L., 4, 203, 207, 210 Summerson Carr, E., 89 Sutherland, H. J., 133 Swinburn, B., 201 Tadman, J., 39 Tattersall, M. H., 133 Tauber, A. I., 132 Taussig, K., 61 Taylor, M., 16 Teghtsoonian, K., 215 Terranova, T., 3 Terrillon, J. C., 107 Therborn, G., 13, 15 Thomas, J. E., 89–90 Thompson, J. B., 188–91 Thorne, S. E., 126, 127 Timmons, S., 206 Ting, D. Y., 128 Tiro, L., 92 Tobin, R. D., 95 Tolstoy, L., 117 Traynor, M., 84 Trommel, W., 189 Tyreman, S., 31, 48–50, 59 Ullman, K., 217 Underhill, K., 175 Varley, J. D., 130, 138 Veinot, T., 7–8, 30–41, 48, 67–8, 76, 85, 94–5, 132, 154, 189, 198, 212–14, 220 Vertinsky, I. B., 119

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Wade, N., 151 Wakeford, T., 62 Wallace, G., 37 Waller, B., 117 Wallerstein, N., 85 Walton, G., 27 Wampold, B. E., 115 Wanless, D., 36, 117 Ward, K., 39, 167, 172, 175–6, 181 Warin, M., 201 Wathen, N., 1–10, 35, 187–8, 211–24 Watt, A., 2 Watt, I. S., 132 Wear, D., 130, 138 Webster, A., 107 Weil, M., 116 Weisgerber, C., 8–9, 57, 94–109, 215 Weisman, C. S., 156 Wells, T., 133 Wente, M., 150 Wickham, G., 31 Wilcox, S., 8, 28, 45–64, 67, 108, 166, 215, 219–20 Wilkes, M., 138 Willard, B. E., 66

261

Williams, A., 32 Williams, C., 68 Wilson, P. M., 31, 39, 198 Wilson, S. A. K., 97 Winnicott, D. W., 124 Wistow, G., 180, 182 Wong, F., 118–19 Woolgar, S., 175 Wright, J., 88, 90 Wright, E. B., 120, 123, 127–8, 130–1, 136 Wyatt, S., 1–10, 164, 167–8, 176, 181, 211–24 Wynne, B., 51, 58 Yadlon, S., 152 Yamey, G., 40 Yao, X., 138 Young, B., 118 Young, L., 69 Ziarek, E. P., 91 Zimmerman, M. K., 89–90 Zoppi, K., 128, 138

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Author Index

Note: Tables are presented in bold type locators and ‘n’ followed by locators refers to notes cited in the text. activism breast cancer, 141, 142–3, 151–8 health consumer, 140 pink ribbon, 141–5, 149, 158 activists AIDS treatment, 46 environmental, 61 agency, and internet use, 175 AIDS activists, 46 Alma Ata Declaration, 14 American Association for Labor Legislation (AALL), 18 American Diabetes Association, 217 anti-hero cancer narratives, 147–8, 150 archaeological research methods, 31 articulation work, 207 authoritative discourse, 170 autonomy discourse of, 113, 117–22, 125 and paternalism, 118–19 bad news, giving of, 118–19, 122–3 ‘bandaid’ internet use, 167–8 Better Information, Better Choices, Better Health, 197 Bevan, Aneurin, 16 Bismarck, Otto Von, 13 bodies, dietitians, 92–3 body weight work, and dietitians, 88–9 Boston Women’s Health Book Collective (BWHBC), 23, 143 breast cancer activism, 141, 142–3, 151–8 aetiology of, 153–4 campaigns, use of funds, 156, 157

commercialisation of, 157 and consumerism, 143–4 environmental causes of, 154–5, 159n.9 incidence/treatment, 155 and individual responsibility, 153, 154 movement, 140 narratives, 145–51 Breast Cancer Awareness Month, 144 campaigns, breast cancer, 156, 157 Canada health care, and empowerment, 25–6 HealthyOntario.com, 32–6 Medicare, 16–17, 20–1 see also Ontario, midwifery in Canada Health Infoway, 25–6 cancer, and individual responsibility, 153 see also breast cancer cancer care, communication in, 118, 120–3, 126–8, 129–36 Cancer Journals, 145–6 care creating conditions for, 221–2 good/bad, 223–4 choice, in healthcare, 182 chronic illness, burden of, 39–40, 213–14 citizen juries, 62–3 citizen producers of health data, 220 citizens, good/responsibilities of, 22–7, 213 civic approach, health, 214–15 262

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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Subject Index

clergy, and sleep paralysis, 101–4 clinical communication as communication skills, 129–31 new model for, 136–9 see also communication; communication skills clinical relationships, cancer care, 128 commercialisation, of breast cancer, 151–8 communication bad news, 118–19, 122–3 cancer, 118, 120–3, 126–8 doctor-patient dialogue, 126–8 health care, 71 patients perspective, 122–3 quality of, 137–8 training, 134, 135 transmission model, 69 see also clinical communication; communication skills communication skills cancer care, 129–36 clinical communication as, 129–31 and communication work, 134–6 and patient-centredness/ empowerment, 131–4 training, cancer care, 120–1 see also clinical communication; communication communication work, and communication skills, 134–6 Community Nutrition Assistants (CNA), 87 consultations, patients needs, 126–7 Consumer and Care, 183, 184 consumerism in health care, 198 and women’s health, 143–4 counter identification, 199 crowd-sourcing, 179 Death of Ivan Ilyich, The, 117 decision-making, 128 democratising medicine/science, 61–3 dependency needs, and paternalism, 122 design-in-use, 206

263

dietetic profession, 83–4 discourses, 113 disidentification, 199 doctor-patient dialogue, communication, 126–8 doctor-patient relationship, 128 see also physician/patient relationship, asymmetry of Douglas, Tommy, 16 efficiency, and marketising, 20–2 e-health discourse, 194 and engagement work, 208–10 ICTs in, 205–8 and self care, 196–9 e-health tools, 95 embodiment, and empowermentcompliance, 91–3 empowerment, 2 and communication skills, 131–4 in dietetics, 84–8 ethics of, 89–91 and Expert Patients Programme, 37–8 and HealthyOntario.com, 34–6 and individual responsibility, 22–7, 29 information as, 204, 208 multiple meanings of, 211–13 and participation, 94 patient, 24 and power relations, 30–1 and self-care, 14 and self-determination, 118 empowerment-compliance, and embodiment, 91–3 empowerment-compliance discourse, dietetics, 84–6 engagement work, and e-health discourse, 208–10 environmental activists, 61 environmental causes, breast cancer, 154–5, 159n.9 e-scaped medicine, 95, 108–9 ethics, of empowerment, 89–91 EURIM, 178 exorcisms, and sleep paralysis, 101–4 experience, 59–60

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

Copyright material from www.palgraveconnect.com - licensed to Universitetsbiblioteket i Tromso - PalgraveConnect - 2011-03-19

Subject Index

Subject Index

expertise, 58–9 expert patient model, 224 Expert Patients Programme (EPP), 36–40, 48 expert patients, 6, 177 feminism and empowerment, 23, 89–90 and informed choice, 66 Galen, 114–15 globalisation, medical knowledge, 219 governance, healthcare, 181 healing context, 115 health as a choice, 213 individual/collective responsibility for, 27–9 and lifestyle, 33 health care individual/collective responsibility for, 27–9 public responsibility for, 15–20 health consumer activism, 140 health data, citizen producers of, 220 health-e citizens, 199–200 health education, 2 health information and internet, 163 types of seekers, 166–75 health knowledge, and patient experiences, 108 health labour, clergy in, 104 Health Net, 174 health policy, New Public Management approach, 181–2 health promotion, and empowerment, 23–4 health work, 141 health(y) care system, 223 health(y) citizenship, 223 healthy living messages, darker side of, 214 HealthyOntario.com, 32–6 hero narratives, breast cancer, 145–51 hope work, 123–5, 127

hospital medicine era, 116 ‘How to Achieve Citizen-Centric Service Delivery: Let the People Speak’, 178 ICTs in e-health discourse, 205–8 identification, 199 identity, 93n.1 illness construction, sleep paralysis, 108 illness experience, 60 immaterial labour, 3–4 midwives/clients, 81 individual responsibility breast cancer, 153, 154 and collective responsibility, 27–9 and technology, 5 see also responsibility inequality, knowledge, 166 information communication technologies, 94–5 as empowerment, 204, 208, 212 giving, 119, 122–3 looking up, internet, 169–71 needs, of patients, 126–7 prescriptions, 24–5 and self-care, 197 and situated knowledge, 203–5 Information for Health, 196 informed choice, 66–9 example conversations, 71–80 rhetorical approach to, 69–70 informed patients, 199–200 informing oneself/others, 218–21 insurance, public health, 13–14 internet and health care provision network, 175 and health information, 163 and health-related agency, 175 and participatory medicine, 94 and research by patients, 171–5 and sleep paralysis, 98 types of users, 166–75 invisibility, 4 invisible work, 4, 207

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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knowledge collective production of, 178 globalisation of, 219 lay, 55–8 and medical profession, 108–9 and patient experiences, 108 and power, 205 situated, 203–5 social distribution of, 165–6 as social negotiation, 51–5 sociology of, 63 lay constructions, sleep paralysis, 99–107 lay expertise, 45, 47–51 lay health information seekers, 223 lay people, dependency on experts, 166 lifestyle, and health, 33 lifestyle messages, breast cancer, 152–3 ‘logic of choice/care’, 222 ‘looking up’ genre, internet use, 169–71 mammography, 156, 159n.7 management, self-, 38–9, 224 and responsibility, 198 ‘man on the street’, 165, 168, 200 marketing, of women’s health, 143–4 marketisation, of National Health Service, 21–2 marketising, and efficiency, 20–2 meaning work, 108 Medicaid, US, 18, 21 medical construction, sleep paralysis, 106–7 medical help, seeking/avoiding, 108 medical knowledge, production of, 95 medical profession, and knowledge, 108–9 medical professionalism, challenges to, 134 Medicare Canada, 16–17, 20–1 US, 18, 21 MedlinePlus, 27 midwifery, and informed choice, 66, 67 Midwifery Model of Care in Ontario, 66

265

National Advanced Communication Skills Training, 129 National Health Service (NHS), 15 efficiency of, 20 and empowerment, 24–5 Expert Patients Programme, 36–40, 48 marketisation of, 21–2 NHS Choices, 183, 184, 185–6 neo-liberalism and dietetics, 92 and informed choice, 67–8 Net.Weight project, 195–6, 198, 204, 208, 209 new public health (NPH) discourse, 197 New Public Management (NPM), 181–2 NHS Choices, 183, 184, 185–6 non-person, creating, 4 North American midwifery movement, 66 Obama-Biden Health Care Plan, 19, 29 obesiogenic environment, 201 obesity and dietitians, 88–9 discourse, 200–3 see also Net.Weight project online searching, 169–71 see also internet Ontario, midwifery in, 66 see also Canada Organizing for America project, 192 Our Bodies, Ourselves, 143 paranormal construction, sleep paralysis, 104–5 participation and empowerment, 94 and website users, 185–6, 189–90, 192 participatory learning, 210 participatory medicine, and internet, 94 paternalism and autonomy, 118–19 era of, 115–17, 121–2 new, 124

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

Copyright material from www.palgraveconnect.com - licensed to Universitetsbiblioteket i Tromso - PalgraveConnect - 2011-03-19

Subject Index

Subject Index

patient-centred medicine (PCM), 217 patient-centredness, 216–18 and communication skills, 131–4 patient empowerment, see empowerment patient experiences, and health knowledge, 108 Patient Opinion, 183, 184, 186, 187 patient satisfaction, cancer care, 132 patients perspective, communication, 122–3 physician/patient relationship, asymmetry of, 120 pink ribbon activism, 141–5, 149, 158 pinkwashing, 157, 158 political action, and websites, 188–90 power and knowledge, 205 and truth, 113 power discourses, and empowerment, 40–1 power relations, and empowerment, 30–1 prescriptions, information, 24–5 professionalism dietetics, 91–2 medical, challenges to, 134 psychotherapy, and context, 115 public health and empowerment, 28–9 individual sphere, 14 origins of, 13 public-ness, 190 public responsibility, for health care, 15–20 quality, of communication, 137–8 quality improvement, and websites, 179 reflexive modernity, 180–8 reflexivity, 181, 191, 192 relationships, physician/patient asymmetry, 120 religious construction, sleep paralysis, 100–4 research, by patients on internet, 171–5

responsibilities, of good citizens, 22–7 responsibility and breast cancer, 153, 154 and empowerment, 22–7, 28–9 individual/collective, 27–9 personal, 3 public, for health care, 15–20 and self-management, 198 and technology, 5 top-down agenda, 220 responsibilization, 215 reverse information asymmetry, 176 rhetoric, defined, 69–70 rhetorical approach to informed choice, 69–70 midwifery care, 71–80, 81 RSI support groups, 46–7 satisfaction, and communication/cancer care, 132 self-care and e-health discourse, 196–9 and redistribution of expertise, 215–16 self-efficacy, 38 self help, 37–8, 117 self-management, 38–9, 224 and responsibility, 198 situated knowledge, and information, 203–5 sleep paralysis, 57, 96–9 lay constructions, 99–107 social construction, of illness, 108 social negotiation, knowledge as, 51–5 sociotechnical approach, 206–7 sous-veillance, 178, 191, 221 Story Bank, 183, 184, 185 subjectivity, 93n.1 surveillance, and reflexivity, 191 symmetrical approaches, research, 52 symptoms, interpreting, 95, 107 technology, and individual responsibility, 5 Theory of Surplus Value, 3 third way, National Health Service, 22

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

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training, communication, 134, 135 transmission model, communication, 69 transparency and reflexivity, 192 and websites, 180, 190–1 trust, in doctors, 171 truth, and power, 113 United Kingdom, National Health Service, see National Health Service (NHS) United States, health care in, 17–21, 26–7 vaccination, and YouTube videos, 57–8 victim blaming, 213–14, 221 voice, in healthcare, 182 ‘warm experts’, 176 web portals, HealthyOntario.com, 32–6 websites editing practices, 186–8 enrolling users to participate, 185–6

267

and political action/symbolic exchange, 188–90 and quality improvement, 179 ‘share your experience’, 183–8 and transparency, 180, 190–1 ‘well informed citizen’, 165, 171, 200 ‘Well-Informed Citizen, The’, 165 ‘well informed patient’, 171–2, 176–7 whole person medicine, 117 Women and our Bodies, a Course, 23 women’s health, marketing of, 143–4 women’s health movement, 66, 142 work articulation, 207 body weight, 88–9 communication, 126, 134–6 dietetic, 83, 84–6 empowerment, 83, 87–8 engagement, 194–5, 208–10 health, 1, 3–7, 35, 141, 211, 223 hope, 9, 123–5, 127 inclusion, 210 invisible, 4–5, 7, 207 meaning, 95, 108 World Health Organization (WHO), 14 YouTube videos, and vaccination, 57–8

10.1057/9780230292543 - Configuring Health Consumers, Edited by Roma Harris, Nadine Wathen and Sally Wyatt

Copyright material from www.palgraveconnect.com - licensed to Universitetsbiblioteket i Tromso - PalgraveConnect - 2011-03-19

Subject Index