Table Of ContentConfiguring Health Consumers
Health, Technology and Society
Series Editors: Andrew Webster, University of York, UK and Sally Wyatt, Royal
Netherlands Academy of Arts and Sciences, The Netherlands
Titles include:
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
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Configuring Health
Consumers
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
Selection and editorial matter © Roma Harris, Nadine Wathen
and Sally Wyatt 2010
Individual chapters © their respective authors
Softcover reprint of the hardcover 1st edition 2010 978-0-230-25196-0
All rights reserved. No reproduction, copy or transmission of this
publication may be made without written permission.
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 978-1-349-32158-2 ISBN 978-0-230-29254-3 (eBook)
DOI 10.1057/9780230292543
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)
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
Contents
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 1
Sally Wyatt, Roma Harris and Nadine Wathen
Part I
2 In Sickness and in Health: Public and Private
Responsibility for Health Care from Bismarck to Obama 13
Leslie Bella
3 Power to the Patient? A Critical Examination of Patient
Empowerment Discourses 30
Tiffany Veinot
Part II
4 Lay Knowledge: The Missing Middle of the Expertise
Debates 45
Sarah Wilcox
5 The Rhetorical Work of Informed Choice in Midwifery:
Situated Knowledges and the Negotiation of Health Care
Decisions 65
Philippa Spoel
6 Empowerment, Compliance and the Ethical Subject in
Dietetic Work 82
Jacqui Gingras and Lucy Aphramor
v
vi Contents
7 Disorder Construction as Lay Work: Examining the
Relationship Between Sleep Paralysis Construction and
Help-Seeking Behaviours 94
Corinne Weisgerber
Part III
8 Facilitating Patients’ Hope Work Through Relationship:
A Critique of the Discourse of Autonomy 113
Pär Salander and Clare Moynihan
9 The Work of Clinical Communication in Cancer Care 126
Peter Salmon
10 Working for the Cure: Challenging Pink Ribbon Activism 140
Maya Goldenberg
Part IV
11 Impatient on the Net: Exploring the Genres of Internet
Use for Health 163
Maria Bakardjieva
12 Sourcing the Crowd for Health Experiences: Letting the
People Speak or Obliging Voice Through Choice? 178
Samantha Adams
13 Working (IT) Out Together: Engaging the Community
in E-Health Developments for Obesity Management 194
Flis Henwood, Leslie Carlin, Elizabeth S. Guy, Audrey M.
Marshall and Helen Smith
14 Working to be Healthy: Empowering Consumers
or Citizens? 211
Roma Harris, Nadine Wathen and Sally Wyatt
Bibliography 225
Author Index 256
Subject Index 262
List of Abbreviations and Acronyms
AALL American Association for Labor Legislation
AIDS acquired immunodeficiency syndrome
AVN avascular necrosis or osteonecrosis
BMI body mass index
BWHBC Boston Women’s Health Book Collective
C client
CANARIE Canadian Network for the Advancement of Research,
Industry and Education
CCF Cooperative Commonwealth Federation
CNA Community Nutrition Assistants
CPR cardiopulmonary resuscitation
DH Department of Health (UK)
DHHS Department of Health and Human Services (UK)
EPP Expert Patients Programme (UK)
GDP gross domestic product
HIAA Health Insurance Association of America
ICTs information and communication technologies
ISP isolated sleep paralysis
MCO managed care organization
MM main midwife
MMR measles, mumps, rubella
NDP New Democratic Party
NHS National Health Service (UK)
NPH new public health
NPM New Public Management
OECD Organisation for Economic Cooperation and
Development
PCM patient-centred medicine
PPS Prospective Payment System
REM rapid eye movement
RSI repetitive strain injury
SM student midwife
SP sleep paralysis
WHO World Health Organization
vii
Acknowledgements
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, self-
care, 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 explor-
ing 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 inte-
gration 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 andMedia Studies at
The University of Western Ontario and the Royal Netherlands Academy
of Arts and Sciences for their financial support of this project.
viii
Series Editors’ Preface
Medicine, health care and the wider social meaning and management
of health are undergoing major changes. In part, this reflects develop-
ments 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 nanotechnol-
ogy, 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 ‘self-
care’ 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 conven-
tional 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 pro-
vided 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 explor-
ing 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
