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Shared Decision-Making
in Health Care
Achieving evidence-based
patient choice
This page intentionally left blank
Shared Decision-Making
in Health Care
Achieving evidence-based
patient choice
SECOND EDITION
Edited by
Adrian Edwards
School of Medicine
Cardiff University, UK
Glyn Elwyn
School of Medicine
Cardiff University, UK
1
1
Great Clarendon Street, Oxford ox2 6dp
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Foreword
Practice variation, shared decision-making, and health care policy
The challenge to the research community is to provide the intellectual basis for a transition from
a healthcare economy where healthcare utilization is based on physician’s opinion to an economy
where the demand is based on informed patient choice. The publication of the second edition of
‘Shared Decision-Making in Health Care: Achieving Evidence-based Patient Choice’ signals the
emergence of an international community of social scientists, epidemiologists, and clinical
science dedicated to advancing the field. It summarizes the current state of knowledge and lays
out the research challenges yet to be met. Its editors and contributors are to be congratulated
for consolidating in one volume the essential features of this emerging science of informed
patient choice.
The policy imperative behind the transition to informed patient’s choice is found in the
practice variation phenomenon. Largely out of concern over costs, policy makers are increasingly
concerned over the striking geographic variation in the incidence of elective surgery and other
preference-sensitive treatments. The variation is judged to be unwarranted because it cannot be
explained on the basis of illness, medical evidence, or patient preference. One important reason
for unwarranted variation is the weakness in clinical science. In the absence of the constraints that
sound clinical science place on clinical ideas, professional opinions on the value of the treatments
they prescribe are necessarily subjective, with inferences made from personal experience and
anecdote or on the basis on an untested clinical theory that might or might not prove true, were
it subjected to clinical investigation.
Another important reason for unwarranted variation resides in flaws in the clinical
decision-making—in the willingness to delegate decision-making to physicians under the
assumption that they can accurately diagnose the treatment preferences of their patients. The
evidence from practice variation research challenges this assumption. Even physicians who base
their decision to operate on up to date “evidence-based” guidelines risk committing a serious
medical error: they risk operating on the wrong patient—on a patient who if adequately informed
would not want the procedure they provide.
Reducing unwarranted variation in preference–sensitive care and establishing the ‘right rate’ for
discretionary surgery and other preference-sensitive interventions require fundamental changes
in the doctor–patient relationship and the standards governing the determination of medical
necessity: delegated decision-making should be replaced by shared decision-making; and the
doctrine of informed patient consent superceded by informed patient choice.
The challenge to policy makers is to promote the transition from delegated decision-making
to informed patient choice: to support improvements in clinical science to assure evidence-based
patient choice; and encourage practicing physicians and their patients to adopt shared decisionmaking as a principle strategy for avoiding the risk of operating on the wrong patient and ensuring that the utilization of preference-sensitive care is based on the decisions of informed patient.
The implications seem clear. More effort is needed to develop models for implementing shared
decision-making into everyday practice and measuring the quality of patient decision-making.
Policy makers need to undertake experiments in reimbursement reform that support the necessary infrastructure and reward clinicians who successfully implement shared decision-making.
vi
FOREWORD
Legal scholars and legislators need to advance the case for establishing informed patient choice as
the legal standard for determining the medical necessity for preference-sensitive care. If, over the
next few years, progress in healthcare policy can catch up with the advances in science, the third
edition of ‘Shared Decision-Making in Health Care: Achieving Evidence-based Patient Choice’ may
tell the history of the transition to a healthcare economy where demand is based on informed
patient choice.
Jack Wennberg
Peggy Y. Thompson Professor of the Evaluative Clinical Sciences
Dartmouth Institute for Health Policy and Clinical Practice
Dartmouth College
New Hampshire
USA
Contents
Forword v
Contributors xv
Section1 Shared decision-making and evidence-based patient
choice
1 Shared decision-making in health care: Achieving
evidence-based patient choice 3
Adrian Edwards and Glyn Elwyn
2 International collaboration in promoting shared decision-making: A history
and prospects 11
Margaret Holmes-Rovner and David Rovner
3 Patient involvement in decision-making: The importance of a broad
conceptualization 17
Vikki Entwistle
4 Shared decision-making: The implications for health care teams and practice 23
France Légaré and Dawn Stacey
5 Evidence-based health care decision-making: Roles for health professionals 29
Dawn Stacey, France Légaré, and Jennifer Kryworuchko
6 Evidence-based health care: What roles for patients? 37
Hazel Thornton
Section 2 Theoretical perspectives
7 Using decision-making theory to inform clinical practice 45
Hilary L. Bekker
8 Evidence and risk: The sociology of health care grappling with knowledge
and uncertainty 53
Tim Rapley and Carl May
9 Ethical issues around evidence-based patient choice and shared
decision-making 59
Søren Holm and Myfanwy Davies
10 The economics of shared decision making 65
Ivar Sønbø Kristiansen and Dorte Gyrd-Hansen
11 The physician–patient encounter: An agency relationship? 73
Amiram Gafni and Cathy Charles
12 Decision-making, power, and the doctor–patient relationship 79
Madeleine J. Murtagh
viii
CONTENTS
Section 3 Conceptual developments
13 Informed Choice: A construct in search of a name 87
Theresa M. Marteau
14 Developing expert patients 95
Anne Rogers
15 Health literacy – achieving consumer ‘empowerment’ in health care decisions 101
Michelle Edwards, Sophie Hill, and Adrian Edwards
16 Conceptual variation and iteration in shared decision-making: The need
for clarity 109
Marla L. Clayman and Gregory Makoul
17 Shared decision-making: From conceptual models to implementation
in clinical practice 117
Glyn Elwyn and Cathy Charles
18 Values clarification 123
Hilary A. Llewellyn-Thomas
19 Risk communication – making evidence part of patient choices 135
Adrian Edwards
20 Measuring ‘decision quality’: Irresolvable difficulties and
an alternative proposal 143
Glyn Elwyn, Benjamin Elwyn, and Talya Miron-Shatz
21 A practical approach to measuring the quality of preference-sensitive
decisions 151
Karen R. Sepucha and Albert G. Mulley
Section 4 Shared decision-making in health care practice
22 What’s happening around the world? 159
Angela Coulter
23 Medical-legal aspects of evidence-based choice and shared decision-making 165
Dennis J. Mazur
24 Helping consumers with their information needs 171
Paul Kinnersley and Adrian Edwards
25 Helping consumers to know their chances 177
Lisa M. Schwartz, Steven Woloshin, and H. Gilbert Welch
26 Making information available to patients and the general public:
The example of ‘Informed Health Online’ from Germany 185
Hilda Bastian, Marco Knelangen, and Beate Zschorlich
27 The role of decision aids in promoting evidence-based patient choice 191
Annette M. O’Connor and Adrian Edwards
28 How effective are patient decision aids? 201
Dawn Stacey, Carol Bennett, Anton Saarimaki, Sara Khangura,
Karen Eden and Nananda Col
29 Examining the theoretical foundation of decision support technologies 209
Marie-Anne Durand and Glyn Elwyn
CONTENTS
30 Should patient stories be used in decision aids? 217
Anna Winterbottom and Hilary Bekker
31 The role of internet-delivered interventions in self-care 223
Elizabeth Murray
32 Decision analysis – utility for everyday use? 231
Richard Thomson
33 The international patient decision aids standards (IPDAS) collaboration:
The checklist, the instrument, and next steps 237
Glyn Elwyn and Annette O’Connor
34 The decision research ‘lab’ 243
Hilary Llewellyn-Thomas
35 Decision aids for preventing cardiovascular disease 249
Alan Montgomery
36 Decision aids in multiple sclerosis 257
Sascha Köpke and Ingrid Mühlhauser
37 Decision aids and shared decision-making in inflammatory bowel disease 263
Anne Kennedy
38 Shared decision-making in mental health 269
Daniela Simon, Celia E. Wills, and Martin Härter
39 Decision aids and shared decision-making in menorrhagia 277
Joanne Protheroe
40 Decision aids in diabetes 285
Matthias Lenz and Ingrid Mühlhauser
41 Promoting critical reflection in breast cancer decision-making 297
Jeff Belkora
42 Decision support in the treatment of aneurysms of the abdominal aorta 305
Anne M. Stiggelbout and J. Kievit
43 From leaflets to edutainment: The evolution of PSA decision support tools 309
Rhodri Evans
44 Decision support in the treatment of prostate conditions 317
Michael J. Barry
45 Decision aids and shared decision-making in mammography screening 325
Alexandra Barratt and Joan Austoker
46 Decision aids to promote shared decision-making for colorectal
cancer screening 333
Carmen Lewis and Michael Pignone
47 Shared decision-making in cardiovascular risk management:
Experiences and challenges 339
Trudy van der Weijden, Ben van Steenkiste, and Marije S. Koelewijn-van Loon
48 Decision aids for MMR vaccination 345
Lyndal Trevena and Julie Leask
49 Supporting decisions in clinical genetics 353
Clara L. Gaff and Bettina Meiser
ix
x
CONTENTS
Section 5 The next and possible future developments
50 A devil’s advocate: Do patients really want shared decision-making? 363
Christopher Price
51 Barriers and facilitators to implementation of shared decision-making 369
France Légaré, Stéphane Ratté, Karine Gravel, and Ian D. Graham
52 Understanding factors that retard the normalization of
decision-support technologies 375
Carl May, France Légaré, Trudy van der Wiejden, and Glyn Elwyn
53 Education and training of health care professionals 381
Angela Towle and William Godolphin
54 Decision aids and beyond: The next decade of decision support technologies 389
Glyn Elwyn, Annette O’Connor, Dominick Frosch, Bob Volk,
and Deb Feldman-Stewart
55 Information therapy: Tomorrow’s promise is happening today – an example
from the commercial sector 395
Donald W. Kemper
56 ‘It’s what we do around here’: Shared decision making as a future
organizational competence 401
Glyn Elwyn and Adrian Edwards
Index 407
Biographies
Adrian Edwards is Professor in General Practice at the Department of Primary Care and Public
Health at Cardiff University. He is also a part-time general practitioner in Cwmbran, Gwent,
South Wales, seeing about 80 patients per week and holds a visiting chair at the University of
South Denmark in Odense. His two main research interests are in risk communication as part of
shared decision-making, and in quality improvement in primary care. Among the former,
research work has included the development and evaluation of training for doctors in risk
communication approaches, and simple decision aids for use in consultations. More recently, this
has focused on development of interactive decision aids that might be used outside consultations.
Other more ‘fundamental’ work is looking at the notion and application of Health Literacy
initiatives that may underpin patient’s involvement in shared decision-making. He was a member
of the lead faculty at the Summer Institute for Informed Patient Choice, Dartmouth College,
New Hampshire (2007). He co-edited the first edition of this volume (Evidence-based Patient
Choice – inevitable or impossible?) with Glyn Elwyn in 2001, and they co-hosted the first and
second International Shared Decision-Making conferences in Oxford (2001) and Swansea (2003).
His methodological research interests centre on systematic reviews, and Professor Edwards
has conducted over 25 different reviews using meta-analysis, meta-regression, and metasynthesis methods. He is a co-editor in the Melbourne-based Consumers and Communication
Review Group of the Cochrane Collaboration. His main Cochrane reviews in this topic area
have addressed the effects of personalized risk communication in screening, interventions to
enhance patients’ participation in consultations, and culturally appropriate health education
for people from ethnic minorities with diabetes. The Quality Improvement research centres
on organizational development in primary care practices, using the ‘Maturity Matrix’ method
(http://www.maturitymatrix.co.uk/). This includes both a dedicated version in Denmark and an
international version across 12 European countries, currently being evaluated.
Glyn Elwyn is a primary care clinician who has research interests in shared decision-making,
decision support technologies, risk communication and the integration of health informatics into
clinical practice. He has published 150 peer-reviewed articles. He was appointed as one of the
inter-school Link Chairs at Cardiff University in May 2005 and leads the Clinical Epidemiology
Interdisciplinary Research Group at the School of Medicine (2007). In collaboration with
Professor Adrian Edwards, he convenes a research group on decision-making and the development of web-based interactive decision support (see www.prosdex.com, www.amniodex.com,
www.bresdex.com). He is involved in the supervision of ten PhD students.
He holds a visiting chair position at ‘IQ’, the Scientific Institute for Quality of Healthcare,
Radboud University & Medical Centre, Nijmegen, The Netherlands. He co-leads the International
Patient Decision Aids Standards Collaboration with Professor Annette O’Connor, Ottawa, and
has been a member of the lead faculty at the Summer Institutes for Informed Patient Choice,
Dartmouth College, New Hampshire (2007 and 2008). He is the Royal College of General
Practitioners’ UK delegate for the European Association of Quality Improvement (EQUIP). He is
the author of ‘Groups’ – a guide to teaching and working in small groups, published by Radcliffe
Medical Press in 2001 and which won the European Association for Healthcare Management’s
Baxter Prize.
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Acknowledgements
Adrian Edwards and Glyn Elwyn are indebted to the many contributors from several countries
to this volume. They thank the authors for their commitment to submit chapters through 2008
and in many cases for their involvement in several chapters. They also want to thank several
other people – colleagues, friends, and family – who have influenced the content of this book
through discussions, correspondence, and conference presentations over the last 10 years or
more in the exciting and expanding field of health care practice and research that is described in
this volume.
This page intentionally left blank
Contributors
Joan Austoker
Director, Cancer Research UK
Primary Care Education Research Group,
Reader in Public Health and
Primary Health Care, Oxford, UK
Alexandra Barratt
Associate Professor of Epidemiology,
School of Public Health, University
of Sydney, Australia
Michael J. Barry
Massachusetts General Hospital & Harvard
Medical School, Boston, USA
Hilda Bastian
German Institute for Quality and
Efficiency in Health Care, Cologne,
Germany
Hilary Bekker
Institute of Health Sciences,
University of Leeds, UK
Angela Coulter
Picker Institute Europe,
King’s Mead House, Oxford, UK
Myfanwy Davies
Department of Primary Care and
Public Health, School of Medicine,
Cardiff University, UK
Marie-Anne Durand
Department of Primary Care and
Public Health,
Centre for Health Sciences Research,
Cardiff University, UK
Karen Eden
Oregon Health and Science University, USA
Adrian Edwards
Professor in General Practice,
School of Medicine,
Cardiff University, UK
Jeff Belkora
University of California,
San Francisco, USA
Michelle Edwards
Department of Primary Care and
Public Health, School of Medicine,
Cardiff University, UK
Carol Bennett
University of Ottawa,
Ottawa Health Research Institute,
Ottawa Hospital, Ontario, Canada
Benjamin Elwyn
Postgraduate student,
Philosophy Department, Kings College,
London, UK
Cathy Charles
McMaster University, Canada
Glyn Elwyn
Professor, Department of Primary Care and
Public Health, School of Medicine,
Cardiff University, Cardiff, UK
Marla L. Clayman
Center for Communication and Medicine,
Division of General Internal Medicine,
Northwestern University Feinberg School
of Medicine, Chicago, Illinois USA
Nananda Col
Center for Outcomes Research
and Evaluation, Maine Medical Center,
Portland, USA
Vikki Entwistle
Universities of Dundee and
St. Andrews, UK
Rhodri Evans
Department of Primary Care and
Public Health, School of Medicine,
Cardiff University, UK
xvi
CONTRIBUTORS
Deb Feldman-Stewart
Associate Professor, Department of Oncology,
Division of Cancer Care and Epidemiology,
Cancer Research Institute, Queen’s
University, Kingston, Ontario, Canada
Dominick Frosch
Assistant Professor, Division of General
Internal Medicine and Health Services
Research, UCLA Department of Medicine,
Los Angeles, USA
Clara L. Gaff
Genetic Health Services Victoria,
Departments of Medicine and Paediatrics,
University of Melbourne, Melbourne,
Australia
Amiram Gafni
McMaster University, Canada
William Godolphin
University of British Columbia, Canada
Ian D. Graham
Associate Professor, School of Nursing,
University of Ottawa; Senior Social Scientist,
Ottawa Health Research Institute, Canada
Karine Gravel
France Legare, Department of Family
Medicine, Université Laval,
Centre Hospitalier Universitaire de Québec,
Hôpital St-François d’Assise10 Rue Espinay,
Québec, Canada
Dorte Gyrd-Hansen
Professor of Health Economics,
Institute of Public Health, Unit for Health
Economics, University of Southern Denmark,
Odense, Denmark
Martin Härter
Department of Psychiatry and Psychotherapy,
Section of Clinical Epidemiology and Health
Services Research, University of Freiburg,
Germany
Sophie Hill
Cochrane Consumers and Communication
Review Group, School of Public Health,
La Trobe University, Victoria, Australia
Søren Holm
Professor, Cardiff Law School,
Cardiff University, UK
Margaret Holmes-Rovner
Professor, Health Services Research,
Michigan State, University College of
Human Medicine, USA
Donald W. Kemper
Healthwise, Idaho, USA
Anne Kennedy
Manchester University, UK
Sara Khangura
University of Ottawa, Ottawa Health
Research Institute, Ottawa Hospital,
Ottawa, Ontario, Canada
J. Kievit
Department of Medical Decision Making,
Leiden University Medical Center, Leiden,
The Netherlands
Paul Kinnersley
Cardiff University, UK
Marco Knelangen
German Institute for Quality and
Efficiency in Health Care, Cologne,
Germany
Marije S. Koelewijn-van Loon
Department of General Practice and Centre
for Quality of Care Research, Maastricht
University, The Netherlands
Sascha Köpke
University of Hamburg, Germany
Ivar Sønbø Kristiansen
Professor, Institute of Public Health,
The Research Unit of General Practice,
University of Southern Denmark,
Odense, Denmark
Jennifer Kryworuchko
Faculty of Health Sciences, School
of Nursing, University of Ottawa,
Ottawa, Canada
Julie Leask
University of Sydney, Australia
CONTRIBUTORS
France Légaré
Department of Family Medicine,
Université Laval, Centre Hospitalier
Universitaire de Québec, Hôpital St-François
d’Assise10 Rue Espinay, Québec, Canada
Matthias Lenz
University of Hamburg, Germany
Carmen Lewis
University of North Carolina Chapel Hill,
Department of Medicine, Sheps Center for
Health Services Research, USA
Hilary A. Llewellyn-Thomas
Center for the Evaluative Clinical Sciences,
Department of Community and Family
Medicine, Dartmouth Medical School, USA
Gregory Makoul
Center for Communication and Medicine,
Division of General Internal Medicine,
Northwestern University Feinberg School of
Medicine, Chicago, Illinois USA
Theresa M Marteau
King’s College London, Psychology and
Genetics Research Group, Department of
Psychology (at Guy’s), Institute of Psychiatry,
Guy’s Campus, London, UK
Albert G. Mulley
Massachusetts General Hospital,
Harvard Medical School, USA
Elizabeth Murray
University College London, UK
Ingrid Mühlhauser
University of Hamburg, Germany
Madeleine J Murtagh
Newcastle University, UK
Annette M. O’Connor
Professor and Tier 1 Canada Research Chair,
University of Ottawa and Ottawa Health
Research Institute, Clinical Epidemiology
Program, Ottawa, Ontario, Canada
Michael Pignone
University of North Carolina Chapel Hill,
Department of Medicine, Sheps Center for
Health Services Research, USA
Christopher Price
School of Postgraduate
Medical and Dental Education,
Cardiff University, UK
Joanne Protheroe
Manchester University, UK
Carl May
Health Technology and Human Relations,
Institute of Health and Society, Newcastle
University, UK
Tim Rapley
Health Technology and Human Relations,
Institute of Health and Society,
Newcastle University, UK
Dennis J. Mazur
Professor, Department of Veterans Affairs
Medical Center, Portland, Oregon, USA
Stéphane Ratté
Doctorale candidate in epidemiology,
Department of Family Medicine,
Université Laval, Centre Hospitalier
Universitaire de Québec,
Hôpital St-François d’Assise10
Rue Espinay, Québec, Canada
Bettina Meiser
Psychosocial Research Group, Prince of Wales
Hospital and Prince of Wales Clinical School,
The University of New South Wales,
Sydney, Australia
Talya Miron-Shatz
Research scholar, Center for Health and
Wellbeing, Princeton University, USA
Alan Montgomery
BRTC Director and Senior Lecturer,
University of Bristol, UK
Anne Rogers
University of Manchester, UK
David Rovner
Professor Emeritus, Endocrinology,
Michigan State University,
College of Human Medicine,
East Lansing, USA
xvii
xviii
CONTRIBUTORS
Anton Saarimaki
University of Ottawa,
Ottawa Health Research Institute, Canada
Lisa M. Schwartz
The Veterans Affairs Outcomes Group,
White River Junction, VT and the Center for
Medicine, the Media and the Public at the
Dartmouth Institute for Health Policy and
Clinical Practice, USA
Karen R. Sepucha
Massachusetts General Hospital, Harvard
Medical School, USA
Daniela Simon
Department of Psychiatry and Psychotherapy,
Section of Clinical Epidemiology and Health
Services Research, University of Freiburg,
Germany
Dawn Stacey
Population Health PhD Program and
Research Associate, Ottawa Health Research
Institute, Ottawa Hospital, Canada
Anne M. Stiggelbout
Department of Medical Decision Making,
Leiden University Medical Center, Leiden,
The Netherlands
Richard Thomson
School of Population and Health Sciences,
Medical School, Framlington Place,
Newcastle upon Tyne, UK
Hazel Thornton
Honorary Visiting Fellow, Department of
Health Sciences, University of Leicester, UK
Angela Towle
University of British Columbia, Canada
Lyndal Trevena
University of Sydney, Australia
Trudy van der Wiejden
Department of General Practice and Centre
for Quality of Care Research, Maastricht
University, The Netherlands
Ben van Steenkiste
Department of General Practice and Centre
for Quality of Care Research, Maastricht
University, The Netherlands
Bob Volk
Associate Professor, Vice Chair for Research,
Department of Family and Community
Medicine, Baylor College of Medicine,
Houston, Texas, USA
H. Gilbert Welch
The Veterans Affairs Outcomes Group,
White River Junction, VT and the Center for
Medicine, the Media and the Public at the
Dartmouth Institute for Health Policy and
Clinical Practice, Hanover, NH, USA
Celia E. Wills
Department of Psychiatry and Psychotherapy,
Section of Clinical Epidemiology and Health
Services Research, University of Freiburg,
Germany
Anna Winterbottom
Institute of Psychological Sciences,
University of Leeds, UK
Steven Woloshin
The Veterans Affairs Outcomes Group,
White River Junction, VT and the Center for
Medicine, the Media and the Public at the
Dartmouth Institute for Health Policy and
Clinical Practice, USA
Beate Zschorlich
German Institute for Quality and Efficiency
in Health Care, Cologne, Germany
Section 1
Shared decision-making
and evidence-based
patient choice
This page intentionally left blank
Chapter 1
Shared decision-making in health care:
Achieving evidence-based patient choice
Adrian Edwards and Glyn Elwyn
Health care communication
The relationship between a patient and their health professional is viewed as one of the most
complex interpersonal relationships. It involves the interaction between people in unequal
positions, often non-voluntary, often addressing vitally important issues, emotionally laden, and
requiring close co-operation (Ong et al., 1995). It has also long been recognized as a vital
influence on the course of illness: Hippocrates observed that ‘some patients, though conscious
that their condition is perilous, recover their health simply through their contentment with the
goodness of the physician’ (Heritage and Maynard, 2006). There is a long history of studying the
doctor–patient relationship in social sciences with seminal work from several authors,
identifying the importance of the ‘sick role’ for the patient (Parsons, 1951), but also how
doctor-centred behaviours attenuate therapeutic possibilities (Byrne and Long, 1976), and how
the extent to which patients adopt passive roles and accept medical expertise and authority vary
with the character time scale and severity of their illness and its treatment or options for
self-treatment (Szasz and Hollander, 1956).
More recently, Roter and Hall (1992) described four basic forms of the doctor–patient
relationship: default, paternalistic, consumerist, and mutualistic. Default relationships are
characterized by a lack of control on either side and are far from ideal. Paternalism is
characterized by dominant doctors and passive patients, whereas consumerism is associated with the
reverse and a focus on patients’ rights and doctors’ obligations. Consumerism in health care is an
extension of the value of individual autonomy, independence, control, and rationality seen
in western societies today (Bishop and Yardley, 2004). However, this is also problematic, and
analysis suggests that this may be because it privileges the representation of patients as ‘rational
actors’ in medical encounters, when a central feature of these encounters is their embodied
and emotional nature (Bishop and Yardley, 2004). Mutuality is characterized by a sharing of
decision-making and often advocated as the best type of relationship.
Shared decision-making
Emanuel E.J. and Emanuel L.L. (1992) suggest that a medical encounter can be judged by three
main dimensions – the extent to which the agenda is set by the doctor, patient, or both in
negotiation, the status of the patient’s values (assumed by doctor, jointly explored, or unexamined), and the doctor’s functional role as guardian, advisor, or consulting technician. The
mutualistic relationship is characterized by a broad balance in power and symbolic resources for
each participant; the agenda is negotiated; the patient’s values are explored, and the doctor takes
an advisory role regarding the patient’s goals and decisions. There is a range of views about what
4
SHARED DECISION-MAKING IN HEALTH CARE
constitutes patient involvement and participation in health care (Thompson, 2007) and a range
of interpretations of what constitutes shared decision-making (Makoul and Clayman, 2005).
However, the most commonly cited and generally accepted conceptualization of shared decisionmaking is that of Charles et al., who identified the key features of shared decision-making as
‘involvement of both the patient and the doctor, a sharing of information by both parties, both
parties taking steps to build a consensus about the preferred treatment, and reaching an
agreement about which treatment to implement’ (Charles et al., 1997).
Shared decision-making (or mutuality, ‘active involvement’, ‘partnership’) has gained a high
level of policy support (Coulter, 2001; Coulter and Ellins, 2006). Paternalistic health care has
fallen out of favour, replaced by the ‘patient-centred model’ (Stewart and Brown, 2001) which
emphasizes patient autonomy, informed consent, and empowerment (supported also, for
example, in General Medical Council descriptions of ‘Good Medical Practice’(Council, 1998)).
However, there is recognition that mutuality or shared decision-making may not suit all types of
patients (Brundage et al., 2005; Deber et al., 2007; Edwards et al., 2005). Furthermore, it is often
difficult to achieve in practice (Berry, 2007; Towle et al., 2006), and it appears something of an
ideal that is far from reality in the everyday practice of doctors and experiences of patients.
Increased patient involvement and shared decision-making do produce beneficial results.
Crawford et al.’s (2002) systematic review showed that higher levels of involvement resulted in
better quality of care, increased satisfaction (for both patients and medical staff), and improved
self-esteem for patients. Other systematic reviews also show the benefits of patient-centred care
(Lewin et al., 2003), and specific interventions such as those before consultations for helping
patients address their information needs (Kinnersley et al., 2007) and decision aids (interventions
such as interactive websites, videos, leaflets to promote deliberative treatment decisions) (Murray
et al., 2005; O’Connor et al., 2003). They report a range of cognitive, affective, behavioural, and
health-status benefits.
Despite some caution on the extent of the benefits of shared decision-making on patient-based
and health outcomes (Joosten et al., 2008), it seems reasonable to continue to promote shared
decision-making or other mutualistic approaches to health care, even though they are not widely
adopted or achieved in practice (Carlsen and Aakvik, 2006). But to achieve change in practice,
we need to examine the process afresh, in more depth, and gain gr
