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National Strategies for Implementing Shared Decision Making

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Shared decision making involves clinicians and patients working together to select appropriate care, based on clinical evidence and the patient’s informed preferences. Despite strong political, ethical and evidential support for this approach, it has been slow to enter the mainstream of medical practice. Greater progress has been made in some countries than others. This study examined the state of SDM implementation in nine leading countries (Australia, Canada, Denmark, Germany, the Netherlands, Norway, Taiwan, UK and USA) with a view to identifying best practice and developing proposals for a system-wide strategy to promote wider use of SDM. A framework for a system-wide SDM implementation strategy is proposed, involving policy, professional and patient leadership, development of basic infrastructure, including training, tools and public campaigns, with practical support and learning from demonstration projects, standardised measurement and feedback, together with practical support and coordination of implementation efforts. The framework offers a checklist of activities that may prove useful, but it is not intended as a universal blueprint - local adaptation is always necessary. The report includes example of initiatives that have been adopted in various countries. Further details of the current state of SDM implementation in each of the nine countries is included in the appendix.
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National Strategies
for Implementing
Shared Decision Making
National Strategies for Implementing
Shared Decision Making
Author
Angela Coulter
Contents | Page 3
Contents
1 Executive summary ......................................................................................... 5
2 Acknowledgements ......................................................................................... 5
3 Declaration of interests ................................................................................... 5
4 Introduction ...................................................................................................... 6
4.1 What is shared decision making? ................................................................................................ 6
4.2 When is it appropriate? ................................................................................................................ 6
4.3 How can it be encouraged? ......................................................................................................... 7
5 Methods ............................................................................................................ 8
6 Implementation strategies .............................................................................. 9
6.1 Clinicians’ attitudes ...................................................................................................................... 9
6.2 A framework for facilitating system-wide implementation of SDM ............................................10
7 Leadership and culture ................................................................................. 12
7.1 Policy bodies..............................................................................................................................12
7.2 Professional organisations ........................................................................................................15
7.3 Patient groups............................................................................................................................16
8 National infrastructure .................................................................................. 17
8.1 Training ......................................................................................................................................17
8.2 Tools ..........................................................................................................................................18
8.3 Campaigns.................................................................................................................................21
9 Supporting local practice .............................................................................. 22
9.1 Demonstration ...........................................................................................................................22
9.2 Measurement .............................................................................................................................24
9.3 Coordination and support ..........................................................................................................27
10 Recommendations for Germany .................................................................. 29
Page 4 | Contents
11 Appendix: country summaries ..................................................................... 30
11.1 Australia .....................................................................................................................................30
11.2 Canada ......................................................................................................................................33
11.3 Denmark ....................................................................................................................................36
11.4 Germany ....................................................................................................................................38
11.5 Netherlands ...............................................................................................................................41
11.6 Norway .......................................................................................................................................44
11.7 Taiwan .......................................................................................................................................47
11.8 United Kingdom .........................................................................................................................50
11.9 United States of America ...........................................................................................................54
12 References ..................................................................................................... 58
Author .....................................................................................................................................................65
Imprint .....................................................................................................................................................66
Executive summary | Page 5
1 Executive summary
Shared decision making involves clinicians and patients working together to select appropriate care, based on
clinical evidence and the patient’s informed preferences.
Despite strong political, ethical and evidential support for this approach, it has been slow to enter the mainstream
of medical practice.
Greater progress has been made in some countries than others. This study examined the state of SDM imple-
mentation in nine leading countries (Australia, Canada, Denmark, Germany, the Netherlands, Norway, Taiwan,
UK and USA) with a view to identifying best practice and developing proposals for a system-wide strategy to pro-
mote wider use of SDM.
A framework for a system-wide SDM implementation strategy is proposed, involving policy, professional and pa-
tient leadership, development of basic infrastructure, including training, tools and public campaigns, with practical
support and learning from demonstration projects, standardised measurement and feedback, together with practi-
cal support and coordination of implementation efforts. The framework offers a checklist of activities that may
prove useful, but it is not intended as a universal blueprint - local adaptation is always necessary.
The report includes example of initiatives that have been adopted in various countries. Further details of the cur-
rent state of SDM implementation in each of the nine countries is included in the appendix.
2 Acknowledgements
I am extremely grateful to the following people who provided invaluable assistance with this project: Martin Härter
and Marion Grote Westrick, for helping to organise the workshop at the 2017 International Shared Decision Mak-
ing conference in Lyon, France; Michael Barry, Pål Gulbrandsen, Jennifer Hadlock, Martin Härter, France Legaré,
Hsun-Hsiang Liao, Ben Moulton, Dawn Stacey, Karina Dahl Steffensen, Lyndal Trevena, and Trudy van der
Weijden, for help in providing information for the country summaries; and to all editors and authors of the ZEFQ
special issue of June 2017 on International Accomplishments in Shared Decision Making, which provided the ba-
sis for this study.
3 Declaration of interests
Angela Coulter has been involved in researching shared decision making since the mid-1980s and has published
more than 100 papers, articles, reports, books and book chapters on the topic. From 2009 to 2015 she provided
paid consultancy support to the not-for-profit Informed Medical Decisions Foundation of Boston, USA. She has
also acted as an advisor on patient engagement and shared decision making to a number of national and interna-
tional public bodies, professional and patient organisations.
Page 6 | Introduction
4 Introduction
4.1 What is shared decision making?
Shared decision making (SDM) is a process in which clinicians (doctors, nurses, therapists and other health pro-
fessionals) and patients work together to select tests, treatments, management or support packages, based on
clinical evidence and the patient’s informed preferences (1). It involves the provision of evidence-based infor-
mation about options, outcomes and uncertainties (often, but not always, assisted by the use of patient decision
aids (PDAs)), together with decision support counselling and a systematic approach to recording and implement-
ing patients’ preferences (2).
Recommended more than 30 years ago by a US Presidential Commission (3), SDM was seen as a means of re-
forming doctor-patient communications and making informed consent more meaningful. It is based on the
premise that clinicians and patients bring different, but equally important forms of expertise to the decision-mak-
ing process. The clinician’s expertise is based on knowledge of the diagnosis, likely prognosis, treatment and
support options and the range of possible outcomes; the patient knows about the impact of the condition on their
daily life, and their personal attitude to risk, values and preferences (1). Good quality decisions draw on both
types of expertise, involving patients and clinicians in a collaborative process to determine the best course of ac-
tion.
4.2 When is it appropriate?
SDM is appropriate for people facing major treatment decisions when there is more than one feasible option, for
decisions about screening tests and preventive strategies, for diagnostic decisions, for maternity care choices, for
setting goals and developing action plans in relation to long-term conditions, for advance care planning for mental
health problems, and for end-of-life care.
Much of the research into SDM has focused on single, discrete decisions about major treatments, but SDM is
also recommended for helping people with long-term conditions who may need to make multiple health decisions
over a long period. Personalised care planning, used in chronic disease management to identify and discuss
problems related to the patient’s condition and develop a plan for managing these, is SDM by another name (4).
In other words, it involves a collaborative conversation or series of conversations in which a patient and a clinician
jointly agree goals and actions for managing the patient’s condition. The attitudes and skills required are the
same as those involved in SDM for acute conditions.
SDM is viewed as an ethical imperative that respects the patient’s right to autonomy, but also recognises their
right to delegate decisions if they wish to. Sensitive listening and excellent communication skills are required, as
well as a commitment to share information, communicate risks, clarify preferences and reach decisions collabora-
tively (5).
Low health literacy need not be a bar to involvement in decisions. Indeed, there is some evidence that people
from disadvantaged groups achieve greater benefit from SDM than those with higher literacy, education and soci-
oeconomic status (6). Interventions that are specially tailored to the needs of these groups are more effective
than those that aren’t. This includes well-designed, well-illustrated PDAs and excellent communication skills to
prepare people for making shared decisions. Extra preparation may also help, including question prompts and
decision coaching prior to clinical consultations (7, 8).
SDM supported by PDAs has been shown to increase patients’ knowledge and ability to participate actively, im-
proving the quality and appropriateness of clinical decision making (9, 10). Cost reduction is an occasional
Introduction | Page 7
welcome side-effect of SDM, since informed patients often want to avoid invasive procedures if there are viable
alternatives (9).
4.3 How can it be encouraged?
There is an extensive body of research into SDM, most of which is focused on the clinical interactions between
patients and clinicians. Those interactions are not the main focus of this report. Instead we are specifically inter-
ested in the external influences on what happens in clinical interactions. By external factors, we mean the
policies, infrastructure and practical support that can strengthen or inhibit the process of incorporating SDM into
mainstream care (figure 1).
Figure 1: Factors that influence implementation of shared decision making
SDM draws together two of the major goals of modern healthcare evidence-based medicine and person-cen-
tred care into a pinnacle of excellence that many aspire to (11). However, despite its many advantages, uptake
of SDM into mainstream care has been slow and highly variable, both within and between countries.
Most people want to be involved in decisions about their care, but their opportunities to do so are often thwarted
by clinicians unwilling, or unable, to cede control (12, 13). It is quite common for doctors to do most of the talking,
seeing themselves as information providers, instead of listening to patients and responding to their concerns (14).
Others believe they do practice SDM, when in fact they don’t, or think their patients don’t want it, when they do
(15). It is true that some patients, used to a more paternalistic style, are surprised when they are expected to play
an active role in decisions about their care. They may need preparation for this role, and encouragement, but the
essential point is that it is a shared process, not a delegation of responsibility to the patient.
Policymakers can do much to encourage and support SDM implementation at a national or more local level, by
understanding and removing barriers, aligning incentives and providing support for practitioners. This report looks
at what is currently happening in those countries that are leading the way in the effort to incorporate SDM into the
mainstream of clinical practice.
Shared
decisions
Clinician's
role
External
influences
Patient's
role
Page 8 | Methods
5 Methods
To achieve better understanding of the factors that help to improve uptake of SDM, the Bertelsmann Foundation
commissioned this study to look at the state of SDM implementation in selected countries, with a view to identify-
ing and sharing good practice.
Our starting point was a special issue of ZEFQ, the Journal of Evidence and Quality in Healthcare, that included
chapters on international accomplishments in shared decision making in 22 countries (16). Nine of these chapters
described relatively advanced implementation strategies, so we focused on these:
Australia (17)
Canada (18)
Denmark (19)
Germany (20)
Netherlands (21)
Norway (22)
Taiwan (23)
UK (24)
USA (25)
By focusing on these nine countries, we certainly do not mean to imply that nothing important is happening else-
where. On the contrary, the ZEFQ special issue described interesting initiatives in many parts of the world, but
time constraints necessitated restricting our attentions to those countries where SDM appears to be more estab-
lished on national policy agendas.
The study included several components. We began by organising a workshop at the 2017 International Shared
Decision Making (ISDM) conference in Lyon, France, to test our understanding of the essential elements of na-
tional strategies for implementing SDM. The workshop was attended by more than 20 participants from Argentina,
Australia, Canada, China, Denmark, Germany, Israel, Netherlands, Norway, Spain, UK and USA, and useful in-
formation was shared and discussed.
Chapters in the ZEFQ special issue, published in June 2017 to coincide with the ISDM conference, were then
carefully reviewed to identify key points and information gaps, together with other relevant literature on SDM im-
plementation. This generated a list of questions about the situation in each country which was sent to
interviewees prior to the interview.
Following this, Skype or phone interviews were organised with at least one author of each of the nine selected
country chapters to obtain more context and detail. The interviews were supplemented with additional information
gathered from web searches and publications, with the assistance of Google Translate where necessary. Inter-
viewees were invited to check the country summaries produced after each interview.
Implementation strategies | Page 9
6 Implementation strategies
6.1 Clinicians’ attitudes
Shared decision making implies a fundamental change in the way clinicians view their roles, from seeing them-
selves as the sole arbiter on what is best for patients, to a more collaborative approach. This often means
modifying long-held attitudes and beliefs. An SDM conversation has been described as a ‘three-talk model’ (figure
2) (26).
Figure 2: The three-talk model of shared decision making
Making this change can be hard for clinicians trained to see themselves as experts. Many barriers, real or per-
ceived, inhibit the change. Studies of doctors’ attitudes to implementing SDM have found that lack of time is the
most commonly reported barrier (27). Some doctors are uncomfortable about relinquishing their role as sole deci-
sion-maker, while others are unwilling to admit to uncertainty about the best option, perhaps fearing that this
would undermine patients’ confidence in them. And some patients may feel ill-equipped to participate in decisions
about their care.
Cultural change is possible, however, and there are signs that positive attitudes towards SDM are beginning to
dominate among both clinicians and patients, but many barriers remain (28). Some clinicians believe they al-
ready practice SDM, while patients’ reports indicate a lack of involvement. Others assume, often mistakenly, that
their patients don’t want it or couldn’t cope with it. Lack of support, lack of tools, rigidity of clinical guidelines, com-
plex work schedules and competing priorities are additional reasons given for resisting exhortations to adopt SDM
(15, 29). These objections are often described as myths or misconceptions, but they must be taken seriously and
dealt with, if the benefits are to be realised (30).
We use the shorthand ‘national’ implementation strategy to refer to any system-wide initiative, be it national, re-
gional or across an accountable care organisation. We acknowledge that responsibility for healthcare is devolved
to regional authorities in some countries and the degree to which this occurs varies from country to country. For
example, states in Australia and the USA, and Canadian provinces, probably have more scope for autonomous
Page 10 | Implementation strategies
decision making than regional authorities in Denmark, Germany, the Netherlands, Norway, Taiwan and the UK,
where health policy is somewhat more centralised, or where the payers, including health insurers, exert a consid-
erable amount of influence over what happens. Even in the most decentralised systems there is scope for federal
activity, and many ‘national’ implementation strategies can be applied at a regional level also.
6.2 A framework for facilitating system-wide implementation of SDM
What are the best means of encouraging the types of behaviour change that will be required if SDM is to become
the norm? Various theories have been developed to explain the social psychology of SDM and the mechanisms
involved, but these don’t really point to what can be done at a system level (31-35).
1
Reviews of behaviour
change strategies underline the importance of having a clear theory or framework to guide actions (30), but few
theories focus on whole system change and we found none that had been applied to national SDM implementa-
tion.
Any strategy for integrating SDM into mainstream practice must take multiple factors into account (37). Building
on a previous study of European experience with SDM (38), and informed by theories of behaviour change (39,
40), we created a framework incorporating the main external factors that can support system-wide uptake of SDM
(figure 3).
Figure 3: Framework for national implementation of shared decision making
This framework is informed by, but considerably simpler than the well-known Behaviour Change Wheel, which
encompasses a more comprehensive list of policy levers, intervention functions and external factors (38). The
authors of the behaviour change wheel point to the fact that people’s capability, motivation and opportunity to
1
A scoping review or organizational and system-level factors influencing the implementation of shared decision
making was published after this report had been written. It focused on published studies only, mostly from the US,
and highlighted similar characteristics to those listed in the framework above. 36. Scholl I, LaRussa A, Hahlweg
P, Kobrin S, Elwyn G. Organizational- and system-level characteristics that influence implementation of shared
decision-making and strategies to address them - a scoping review. Implementation science : IS. 2018;13(1):40.
Leadership
Policy
Professional
Patient
Infrastructure
Training
Tools
Campaigns
Practice
Demonstration
Measurement
Coordination
Implementation strategies | Page 11
adopt or change a specific behaviour can be influenced by a wide range of possible interventions. The compre-
hensive nature of their model makes it too complex for our purpose, but its general approach is helpful for
identifying the types of interventions that should be considered when developing a system-wide strategy to imple-
ment SDM.
Our framework categorises various activities to promote SDM implementation that are currently being undertaken
in the countries we reviewed. It is not intended as an explanatory model, nor is it a universal blueprint, but rather
a checklist for use by those wishing to facilitate wider uptake of SDM. We have grouped the various facilitatory
factors under three headings leadership, infrastructure and practice, the details of which are explained in the
next section of this report.
Our framework was also informed by ideas from behavioural economics on how to encourage behaviour change
(39). The EAST approach offers four useful principles:
1) make it Easy - harnessing the power of defaults, limiting the amount of effort required, and simplifying
messages.
2) make it Attractive - drawing attention to the desired behaviour and ensuring that incentives are aligned.
3) make it Social using the power of social relationships and networks and encouraging commitment.
4) make it Timely prompting people when they are most receptive, focusing on immediate costs and
benefits, identifying barriers to action and developing specific plans to address them (39).
Thus, an implementation strategy should take account of existing human and financial resources, workflows, clini-
cal pathways and time pressures to work out how to incorporate SDM without disrupting these. It should include
the provision of simple tools and reminders to make it as easy as possible to implement. It should consider incen-
tives for clinicians and patients to participate, including possible rewards and sanctions, strengthening these
where necessary. It should engage professional and patient networks and build on their leadership capacity, en-
couraging them to commit to specific activities. And it should be opportunistic, linking the desired shift to existing
goals and policies, demonstrating how SDM aligns with other current issues that people care about.
The situation in each of the nine countries is outlined in the country summaries in the Appendix to this report, cat-
egorised under the headings listed in figure 3, and supported by web links and references. The next section of the
report summarises each of the policies, activities or interventions adopted in one or more of the nine countries,
together with brief examples of how and where they are being implemented.
It is important to be aware of likely biases in the accounts of SDM initiatives cited below and the country over-
views from which they were drawn. They were mostly derived from articles, reports and websites produced by
various actors in the field, or described by individual interviewees, all of whom were engaged in SDM implemen-
tation to some degree. These are not dispassionate accounts of rigorously conducted research, nor is it
reasonable to think that any individual could have a complete picture of everything that is happening in his/her
country in relation to SDM implementation. For these reasons, the examples may provide an overly optimistic pic-
ture of the current state of play in each of the countries, but this should not detract from their value as a source of
useful ideas. The demand for greater patient and public involvement and a more personalised system of care is
growing ever stronger and this is a fast-moving field. There is much to be gained from sharing examples of what
health systems can do to satisfy these expectations.
Page 12 | Leadership and culture
7 Leadership and culture
7.1 Policy bodies
National implementation strategies require effective leadership underpinned by supportive policies and enabling
legislation. Leadership is key to creating a culture that is receptive to new ideas and new ways of working. Policy
leadership may come from the health ministry, other government departments, or from non-governmental organi-
sations. This type of leadership was clearly an important factor in several of the countries that are leading the way
in SDM implementation (figure 4):
Figure 4: Political leadership and policies
Actors
Activities
Ministries
Setting goals and priorities
Ministerial speeches
Hosting national and international conferences
Incorporating SDM into national plans (e.g. cancer
plans)
Funding for research and development
Financial incentives to practice SDM
Parliament/legislators and law courts
Patients’ rights laws and charters
Legal judgements
Health technology assessment agencies and produc-
ers of clinical guidelines
Evidence reviews and summaries
Development of patient decision aids
Support for SDM in clinical guidelines
Quality improvement agencies, accreditation bodies
and organisational regulators
Incorporating SDM into good practice standards
Educational materials
Inspection and measurement
Ministerial interest and leadership can help to create a supportive climate for SDM implementation, especially
when governments and other policy bodies provide support in the form of dedicated funds. Examples of countries
where this has made a significant impact include Germany, the Netherlands and Taiwan.
There has been high level support for person-centred care in Germany from the Federal Ministry of
Health, the Federal Ministry of Education and Research, and several other policy bodes. The Ministry of
Health provided the first funds for research into SDM in 2001-5. Following that a large research pro-
gramme was launched in 2008 involving different ministries, insurance companies and the German
statutory pension scheme. This provided more than 20 million to fund around 70 research projects on
patient involvement in care.
There is strong commitment to SDM from the Ministry of Health in the Netherlands. Through the
Healthcare Institute, the Ministry of Health has provided grants of 5 million for five years to improve
transparency and patient-centredness, including SDM, leading to several implementation projects. The
Netherlands Organisation for Health Research and Development has also provided funds for this pur-
pose.
Leadership and culture | Page 13
The Taiwan Ministry of Health and Welfare is strongly committed to patient safety, evidence-based medi-
cine and patient-centred care and SDM is seen as an important aspect of both. National implementation
of SDM was launched in 2015 following a pilot study in 10 hospitals, together with a series of specialist
consultations and consensus meetings, involving patient groups, professional organisations, the Joint
Commission of Taiwan and Taiwan Medical Association. The resulting implementation plan involved mul-
tiple coordinated approaches.
While health ministers usually stress ethical reasons for encouraging SDM ‘the right thing to do’ (11), they often
hope that it will also be an effective means of cost-containment, leading to the holy grail of high quality care at
lower cost. While it is reasonable to expect SDM to lead to a return-on-investment expressed in terms of greater
value for patients, it has not been shown to reduce costs. There is some evidence that patients do tend to opt for
less invasive interventions when given clear information about treatment options (9, 41) and doctors sometimes
see this as an advantage too (42), but over-emphasis of this potential side-effect of SDM can risk alienating clini-
cians and patients. SDM should not been seen as a means of rationing access to healthcare, or as a tool for cost
reduction.
National implementation strategies often begin by focusing on specific clinical topics or conditions. Incorporating
SDM into national clinical plans, especially national cancer plans, has been a feature in several countries, includ-
ing Denmark, Germany, and Norway.
The fourth version of the Danish Cancer Plan, published in 2016, included a strong focus on SDM, sup-
ported by government funds of 22 million DKK (2 million) to implement the policy and develop PDAs for
cancer patients.
The latest update of the German cancer plan aims to improve the quality of patient information, to involve
patients actively in making decisions about their care, and to implement SDM in clinical practice. There is
also a commitment to provide balanced and unbiased information on the benefits and harms of cancer
screening programmes. Funds have been made available to study how best to achieve these goals.
The Norwegian Directorate of Health has introduced 28 cancer patient pathways and SDM has been in-
corporated into these.
Many cancer plans are aimed at achieving faster, more efficient care for patients. This is clearly beneficial in most
cases, but it can pose challenges for SDM if fast-tracking leaves insufficient time for patients to consider their op-
tions.
National cancer plans are fashionable now in many countries, but this type of approach to system-wide disease
planning rarely extends to other conditions. Nevertheless, some priority topics are being tackled in several coun-
tries and promotion of SDM has been a feature of these initiatives. One such example is management of
musculoskeletal conditions:
NHS England has provided funding and support for a network of ten organisations to introduce SDM into
musculoskeletal care pathways. They are helped to develop detailed action plans and timelines and are
encouraged to identify clinical and patient champions, to organise training workshops, to use quality-as-
sured information materials and decision aids, and to monitor and report on their progress.
7.1.1 Financial incentives
As well requiring new skills, SDM consultations may take a little longer to accomplish. This should not be a major
problem a systematic review (9) found that use of PDAs led to a median increase in consultation length of 2.6
minutes but it can act as a disincentive. To counter this, financial incentives have been introduced in the Neth-
erlands and the USA to encourage clinicians to practice SDM.
The Netherlands Ministry of Health has announced the provision of a specific registration code to finance
the extra time needed for SDM consultations.
In 2017 the US Centers for Medicare and Medicaid Services (CMS) introduced plans to test two new
types of payment incentive the SDM model (where decision support is provided within clinical encoun-
ters) and the Direct Decision Support (DDS) model (where it is provided outside the clinical care setting).
Page 14 | Leadership and culture
The SDM model was later shelved due to lack of interest from Accountable Care Organisations. The DDS
model is still in place however, and once fully rolled out it should provide decision support to a significant
majority of the Medicare fee-for-service population with heart disease, hip or knee osteoarthritis, herni-
ated disc, prostate cancer, and benign prostatic hyperplasia.
Provision of dedicated funding streams for SDM research and development have been very important in stimulat-
ing implementation. Much of the initial impetus for SDM came from academic researchers, and ready availability
of funds enabled them to extend their efforts into evaluating various implementation strategies. This has been an
important feature of SDM developments in Australia, Canada, Denmark, Germany, Netherlands, Norway and
USA.
Payment methods could act as a disincentive to practising SDM, for example if clinicians paid on a fee-for-service
basis are concerned that their income will be reduced if patients refuse certain treatments. We found no evidence
that this is occurring in any of the countries reviewed here, but it may be an under-reported barrier requiring the
attention of policymakers if it becomes apparent.
7.1.2 Patients’ rights
Patients’ rights laws or charters are ubiquitous in most developed countries nowadays. Each of the nine countries
in our study benefits from legislation or charters clarifying patients’ rights, including the right to be given infor-
mation about treatment options and the right to make decisions about these. While this is an important part of the
legislative framework, often these rights are not well publicised and compliance is not effectively monitored. There
is much that could be done to strengthen this aspect of public policy.
One example of an important development in this regard occurred in the UK recently, when a patient’s
complaint about lack of information on treatment options reached the Supreme Court, and their judge-
ment set a new standard for informed consent that amounts to a legal requirement for SDM (42).
7.1.3 Clinical guidance and quality standards
There are moves afoot in several countries to link SDM to work on health technology assessment and clinical
guidelines. Interesting initiatives include development of PDAs by health technology assessment agencies, such
as IQWiG in Germany and NICE in England, linked to clinical guidelines.
The Institute for Quality and Efficiency in Healthcare (IQWiG) in Germany, an independent, non-govern-
mental, not-for-profit foundation that carries out health technology assessments, provides evidence-
based health information for patients and public, including some PDAs (e.g. on cancer screening) on its
national portal.
The National Institute for Health and Care Excellence (NICE), which produces evidence-based guidance
for the NHS in the UK, has published several quality standards underlining the need for SDM, is develop-
ing PDAs to go alongside some of its clinical guidelines, and is working on the production of a guideline
on the uses and effects of SDM.
Alignment with guideline producers makes good sense, since both clinical guidelines and PDAs draw on the
same evidence base, so developing both together may prove more efficient (43). It may also encourage greater
awareness of, and trust in these tools among clinicians.
Quality improvement agencies, accreditation bodies and organisational regulators can reinforce the importance of
SDM through their quality standards and inspections, and many are beginning to do so.
A good example is the Australian Commission on Safety and Quality in Healthcare (ACSQHC), whose
accreditation standards include a requirement to demonstrate partnership with patients at individual, ser-
vice and system levels, and to promote SDM.
Leadership and culture | Page 15
7.2 Professional organisations
Professional leadership is key to shaping the culture of care and organisations and specialty societies can do
much to persuade their constituents and members that SDM is a standard of practice that they should aspire to.
Professional associations tend to be quite conservative in their approach, but we found several examples of pro-
fessional initiatives to promote SDM, listed in figure 5.
Figure 5: Professional leadership
Actors
Activities
Professional regulators
Codes of conduct
Training standards
Medical colleges and specialty societies
Curriculum design
Clinical guidelines
Collaboration with patient organisations
Campaigns, e.g. Choosing Wisely
Ambassadors and change agents
Our review of nine countries found an encouraging number of professional organisations supporting wider use of
SDM.
Professional regulators, such as the Australian Medical Council and the UK’s General Medical Council
state clearly in their codes of conduct that doctors should work in partnership with patients, providing the
information they need to make decisions about their care. Since these organisations are also responsible
for setting training standards, that ought to mean that SDM skills are incorporated into medical curricula,
but as we note below, this type of training has not been universally implemented as yet.
7.2.1 Specialty societies
Sentiments of support for SDM also appear in the professional ethical codes of the Royal Australian College of
General Practitioners, the College of Family Physicians of Canada and numerous American specialty societies,
but such statements, though welcome, are not likely to make much impact unless they are accompanied by prac-
tical actions. Some specialty societies have gone beyond simply publishing codes, taking specific actions to
ensure they are implemented.
The Danish Association of Junior Doctors has launched a programme to train doctors as ‘ambassadors
or change agents to promote SDM to their colleagues.
The German Association of Scientific Medical Societies is facilitating SDM through the production of pa-
tient information materials.
Three organisations in the Netherlands the Federation of Medical Specialties, the College of General
Practitioners, and the Dutch Federation of Patients Organisations have launched a public website con-
taining evidence-based information and PDAs to complement their clinical guidelines.
The UK’s Academy of Medical Royal Colleges is promoting SDM through its Choosing Wisely campaign,
a key goal of which is to encourage better conversations between patients and doctors. Choosing Wisely
has been adopted in more than 20 countries worldwide, and several of these, including Australia, Canada
and the USA, are actively promoting patient involvement.
Also in the UK, the Royal College of General Practitioners is working with other organisations to promote
SDM for people with chronic or long-term conditions by involving them in goal-setting and action-plan-
ning.
Various medical organizations in the US have highlighted the need for SDM in their clinical guidelines
and some of these have developed or endorsed PDAs.
Page 16 | Leadership and culture
7.3 Patient groups
While patient organisations play an active role in promoting person-centred care at national, regional and organi-
sational levels in most of the countries we looked at, these groups have not generally been at the forefront of
moves to implement SDM. However, a few trailblazers have demonstrated the potential impact of their role as
advocates for involvement in treatment decisions (figure 6). This is important, not just because of their political
influence, but also because it can help to instil confidence among their members that it is acceptable to ask ques-
tions and express their views on treatment options.
Figure 6: Patient leadership
Actors
Activities
General patient/consumer organisations and ‘um-
brella’ groups
Advocacy campaigns
Designing and advising on implementation projects
Evidence summaries
Collaborative projects
Surveys
Disease-focused patient organisations
Helping to design PDAs and other materials
Involvement in research and evaluation
Information and publicity
Danish Patients, an umbrella organisation for 83 patient associations, and its knowledge centre subsidi-
ary, Vibis, played a leading role in the development of SDM in Denmark. They have actively campaigned
for it, informed their members about it, and are currently involved in helping to deliver an SDM implemen-
tation programme in Aarhus hospital. They are also working with the Danish Association of Junior
Doctors to help develop their SDM ambassadors programme.
The Dutch Federation of Patient Organisations has also actively campaigned for SDM. They were re-
sponsible for finding a suitable term to describe it in Dutch, ‘samen beslissen’ – making decisions
together, thus solving the problem of how to translate the term from English since Dutch has no exact
equivalent.
National Voices, a coalition of 140 charities based in the UK, is also an effective advocate for SDM. Their
Narrative for Person-Centred Coordinated Care (44), has been influential at national and local policy lev-
els. They have also produced summaries of the evidence for person-centred care, including SDM, and
have used overviews of national patient survey data to draw attention to slow progress in rolling out SDM
(45).
The groups whose activities are described above have a broad focus, but single-issue patient groups and individ-
uals concerned with specific conditions can also play a useful role. Many developers of patient information
materials and PDAs enlist patient representatives to help develop and test these tools, and patient organisations
then publicise these to their members. Cancer patient organisations played an active role in several of the coun-
tries we looked at, but it was mainly a supportive rather than leading role.
National infrastructure | Page 17
8 National infrastructure
8.1 Training
Any strategy for SDM implementation should include a training component for clinical staff. Ideally such courses
should teach theory and concepts, provide opportunities to observe SDM in practice, and give students ample
time to test their skills and obtain feedback on these. SDM involves a great deal more than simply giving infor-
mation, so it is highly unlikely that all this can be achieved in a single session without additional reinforcement
(26, 46-49) (figure 7).
Figure 7: Shared decision making skills and competencies
Training levels
Learning objectives
Pre-registration
Post-registration
Continuing professional development
E-learning
Relational competencies:
Developing a partnership and building trust
Non-directive interviewing
Active listening
Empathising
Assessing health literacy and mental capacity
Using plain language
Awareness of patients’ information needs
Communicating relevant information
Cultural competence
Negotiation skills
Ethical issues
Risk communication competencies:
Explaining that a decision needs to be made
Listing treatment options
Explaining and discussing prognosis, proba-
bilities, risks and uncertainties
Communicating benefits and harms
Using PDAs
Eliciting preferences
Collaborative goal-setting and action planning
Making decisions together
8.1.1 Communication skills
While most medical and nursing students receive some communication skills training, it is often at a fairly basic
level, and does not usually include SDM. A systematic approach to embedding SDM training into regular under-
graduate, postgraduate, or professional courses is rare. Many SDM training courses are one-off initiatives,
developed in isolation and not evaluated. Frequently they lack structured assessments, aside from one or two
multiple choice questions in a final exam. There is no common agreement on the most appropriate stage of train-
ing to introduce these skills, nor how and when they should be reinforced.
Despite these problems, our country reviews indicated a growing demand from clinicians, at various stages of
their professional development, for SDM training and increasing numbers of bespoke courses are now being of-
fered. An inventory of SDM training programmes developed at Laval University in Quebec, Canada, listed more
than 100 initiatives up to 2013 and many more have been developed since then. There is an increasing number
Page 18 | National infrastructure
of online courses, intended to support self-study or as an adjunct to a classroom-based course. These may be
very helpful for showing people what is involved, but they are no substitute for real-life practice.
8.1.2 Training initiatives
We noted a number of interesting examples of training initiatives.
The Australian Commission on Safety and Quality in Health Care (ACSQHC) and the Royal Australian
College of General Practitioners have developed an open-access e-learning course.
The Ottawa Hospital Institute in Canada has developed a range of training materials that are now being
widely used around the world
The Vejle Hospital in Denmark has incorporated SDM training into its three-day mandatory training pro-
gramme for all staff
At the University of Hamburg in Germany every medical student receives SDM training in the fourth se-
mester and this is assessed with a specially-designed Objective Structured Clinical Examination (OSCE)
Maastricht University in the Netherlands has developed a list of 20 core competencies for SDM and as-
sessment tools, including taped consultations, are under development.
In Norway, the Ministry of Health has introduced mandatory postgraduate training in communication skills
and SDM
In Taiwan SDM training courses are being offered to staff in more than 40 hospitals
In the UK, training workshops developed as part of the MAGIC (Making Good decisions In Collaboration)
SDM demonstration programme are now being provided for clinicians in a range of medical specialties
The US Agency for Health Research and Quality’s SHARE training programme is rolling out its five-steps
approach to SDM skills, including train-the-trainers courses.
8.2 Tools
8.2.1 Question prompts
The simplest SDM tools are question prompts designed to encourage patients to ask questions and providers to
be ready to answer them. An Australian trial tested the use of three questions asked by simulated patients during
GP consultations (Figure 8). Use of these questions improved the amount of information provided by the GPs and
led to increased participation by the patients (50). There is little evidence on whether ordinary (non-simulated)
patients are willing to ask such questions, but the idea has caught on and is now incorporated incampaigns
across Australia and many other countries, including Denmark, Norway, UK and USA (see below for details of
campaigns).
Figure 8: Ask, Share, Know three questions
1. What are my options (including watch and wait)?
2. What are the possible benefits and harms of those options?
3. How likely are each of the benefits and harms to happen to me?
8.2.2 Patient decision aids
Situations where there is a simple choice between treatment or no treatment are relatively rare. At most clinical
decision points there are a number of alternatives, including different types of intervention or different interven-
tions of the same type (e.g. different drugs), or various support packages, preventive strategies, or lifestyle
changes, in addition to the option of watchful waiting or doing nothing.
Patients who want to participate in decisions about their care need access to well-designed, comprehensible in-
formation about their condition(s) and the options for dealing with it. This must be based on reliable research
National infrastructure | Page 19
evidence wherever possible, outlining likely outcomes and knowledge gaps in a clear, comprehensible and unbi-
ased manner.
PDAs are designed to prepare patients to participate in shared decisions with clinicians - to supplement clinical
discussions, not to supplant them. Ranging from simple leaflets to more detailed booklets, videos, and web-tools,
PDAs provide information on treatment or management options, and often include tools to help users clarify their
preferences in preparation for making a decision. Unlike clinical guidelines, which are often derived from the
same evidence base, PDAs do not tell people what to do and do not make recommendations. They are prepara-
tion tools or conversation aids, designed to support collaborative decision making with a clinician.
PDAs have been extensively researched a Cochrane systematic review looking at the effectiveness of these
tools identified 105 randomised controlled trials, and concluded that their use leads to improvements in people’s
knowledge, improves their understanding of risks, and helps them be clear about what matters most to them,
leading to more appropriate treatment (9). Patients who use these tools are clearer about the decisions they need
to make, more willing and able to participate, and they tend to be less likely to choose elective surgery over other
alternatives. The meta-analysis found a small increase in consultation length of 2.6 minutes when PDAs were
used, but the total time spent in an episode of care may be the same or possibly shorter.
Some PDAs are intended for use as conversation guides within clinical consultations, while others are designed
for the patient to review at home, either before or after a clinical discussion. There is no evidence on which works
best, but there does seem to be a general move towards the development of briefer tools and away from those
that require considerable investment to develop and disseminate.
Decision aids are not essential for SDM but they can be very useful, especially for decisions involving more than
two options or those where the patient needs to absorb and understand complex evidence.
PDAs were under development in each of the countries in our study. There were several particularly interesting
initiatives.
In Australia, the Ask, Share, Know GP network, a collaboration between Bond University and the Univer-
sity of Sydney, has been established to test and translate resources to improve uptake of evidence-based
practice and SDM. They produce evidence summaries and PDAs to help GPs manage a variety of condi-
tions.
In Canada, the Ottawa Hospital Research Institute’s global A-Z Inventory of PDAs provides links to a
large number of PDAs covering nearly 150 different conditions.
Laval University in Canada produces the Decision Box, an evidence-based summary of the most im-
portant benefits and harms of a health care intervention. The clinician version of the Decision Box
prepares healthcare professionals to translate evidence to patients. The patient version aims to support
discussions between patients, their healthcare providers and their family members.
The Centre for Shared Decision Making at Vejle Hospital in Denmark is working with the Design School
Kolding to develop a Danish platform for PDAs. This takes the form of a generic template that can be
populated with relevant data for a variety of different decisions. The design and content of the PDAs are
being carefully tested with patients in different demonstration projects within the hospital. They are care-
fully designed to meet the IPDAS criteria.
IQWiG in Germany, which is developing its national portal for patient information, is planning to include a
central register of PDAs. They also hope to introduce a more coordinated approach to the development
of these tools. It is intended that the national portal will include an assessment of the quality of PDAs.
A Dutch website, Med-Decs, provides links to PDAs developed in the Netherlands and internationally
covering 22 disease areas.
PDAs developed by the University Hospital of North Norway have been published on the My Treatment
Choices website and this will shortly be incorporated into the national health information portal, Health
Norway..
Another Norwegian website, DECIDE Treatment, currently being developed by a team from the Univer-
sity of Oslo, aims to support shared decision making and care planning for people with long-term
Page 20 | National infrastructure
conditions to self-manage their health. This platform has been designed for use with multiple clinical top-
ics and includes tools called Health Helpers to support a variety of decisions.
MAGICapp is a tool for developing and publishing structured electronic guidelines, evidence summaries
and PDAs developed by a team based at the University of Oslo in Norway, in collaboration with a number
of international organisations and research groups. It is early days yet, but it holds out the possibility of
automated development of PDAs alongside clinical guidelines.
In 2016 the Ministry of Health in Taiwan invited medical associations to suggest priority topics for the de-
velopment of PDAs and 22 themes were suggested. A total of 174 tools were developed by hospital staff
covering most of the 22 themes plus several others. An expert committee was established to review
these against IPDAS criteria, leading to the approval of 57 PDAs for wider dissemination. These were
then uploaded onto a national SDM platform for use by medical care providers across the country.
A number of organisations in the UK have developed PDAs for use in the NHS, including NHS England,
which has funded and approved 52 PDAs, NICE, and the Health Foundation’s MAGIC (making good de-
cisions in collaboration) programme. These are all freely available on various websites, and the NICE
website now carries links to 77 PDAs.
Many US-based organisations have developed PDAs, including researchers, companies (both for-profit
and not-for-profit), health care providers, professional societies, insurers, and government agencies. Ex-
amples include AHRQ, EBSCO Health, Health Dialog, Healthwise, and Mayo Clinic.
8.2.3 Quality assurance
It is important that PDAs are developed carefully and their content is reliable and tested with patients. The Inter-
national Patient Decision Aid Standards (IPDAS) collaboration has developed a list of quality criteria and a
checklist for assessing these (51-54). IPDAS is widely used by PDA developers and is increasingly used to as-
sess the quality of PDAs prior to including them on an electronic register or portal. IPDAS includes 40 quality
criteria but the basic characteristics are shown in figure 9:
Figure 9: Essential elements of a patient decision aid (53)
Describes the health condition or problem (treatment, procedure or investigation)
States the decision that needs to be considered
Describes the options available
Describes the positive features (benefits or advantages) of each option
Describes the negative features (harms, side-effects or disadvantages) of each option
Describes what it is like to experience the consequences of the options (physical, psychological, social)
IPDAS is being proposed as the basis for PDA certification schemes in the US, and is influencing developments
in Australia, Canada, Denmark, Germany, the Netherlands, Norway, Taiwan and the UK.
8.2.4 Decision aid development and maintenance
PDA development is a very important step towards implementing SDM, but provision of these tools is not suffi-
cient on its own. This obvious point has sometimes been missed in projects focusing on tools exclusively, without
providing training and support to ensure they are used appropriately (55).
Many PDAs have been developed by academics for use in research studies, with no plan as to how they will be
disseminated and used after the study has ended (56). Few of these study-generated PDAs are supported by
institutions that have the capacity and resources to regularly review them and ensure they are kept up-to-date;
some are hard to find due to lack of national portals or expensive to purchase; dissemination often relies on the
publication of academic papers and other ad hoc means; and there have been few attempts to incorporate PDAs
into electronic medical record systems to ensure they are always available when needed.
A potential solution is to make PDA development and/or maintenance the responsibility of established institutions,
such as those responsible for producing national clinical guidelines, for example the Institute for Quality and Effi-
ciency in Health Care (IQWiG) in Germany, or the National Institute for Health and Care Excellence (NICE) in the
National infrastructure | Page 21
UK. These organisations are now beginning to develop their roles in relation to SDM, and this type of solution
seems likely to emerge in other countries before long.
8.3 Campaigns
Social marketing campaigns form a key part of many implementation strategies, so it is not surprising that these
have featured in several countries’ efforts to promote SDM. Social marketing has been defined as “the adaptation
of commercial marketing technologies to programs designed to influence the voluntary behavior of target audi-
ences to improve their personal welfare and that of the society of which they are a part” (57). Many of these
campaigns are focused on preparing patients to play an active role in decisions about their care.
In Australia the ACSQHC partnered with HealthDirect Australia, the national public health portal, to de-
velop and promote a Question Builder to encourage patients to ask relevant questions about their health
problems and treatment in specific settings.
Choosing Wisely Canada aims to reduce unnecessary care by promoting better conversations between
patients and clinicians. It’s More is not always better campaign uses advertising techniques to encourage
patients to talk to doctors about when they might need a particular test or treatment and when they don’t.
Hello Healthcare, a cooperation between Danish Foundation TrygFonden and the Danish Society for Pa-
tient Safety, developed a tool Just Ask a small booklet of questions other patients have found helpful in
their care, such as, “Could you please explain it another way?” “Is there an alternative?” and “Could my
wife be present during rounds?”
The Dutch Federation of Patients’ Organisations and the Federation of Medical Specialties launched a
national campaign entitled Improved Care Starts with a Good Conversation to build awareness of SDM
among both patients and clinicians. They also launched an Ask 3 Questions campaign that is used in ap-
proximately half of all Dutch hospitals.
A national campaign was launched in Taiwan to encourage medical and healthcare organisations to prac-
tice SDM and to promote the use and development of PDAs. Videos were produced to promote SDM to
healthcare professionals and patients. Available in two dialects (Taiwanese and Hakka) in addition to
Mandarin Chinese, the public version encourages patients to consider what matters most to them and to
communicate their expectations to doctors. The professional version provides information about SDM,
including the differences between SDM, informed consent and health education, PDAs, and how the pro-
cess can be implemented.
Those involved in the MAGIC programme in the UK wanted to raise patients’ awareness of SDM and
change their expectations about how they might share decisions with clinicians. They involved patient
representatives in the design and content of social marketing materials, which included flyers, handouts,
pens, posters, videos and ‘sticky’ notes. Clinical teams used the MAGIC materials in their clinics and
waiting rooms and handed out flyers to patients. 61% of clinicians who participated in the evaluation of
the MAGIC programme reported that their patients were more likely to ask questions as a result of the
campaign (58). It is also likely that the materials provided helpful reminders to clinicians to be ready to
answer patients’ questions.
In October 2017 the US National Quality Forum, in partnership with 20 professional and patient organisa-
tions, issued a national call to action for all individuals and organizations that provide, receive, pay for,
and make policies for healthcare to embrace and integrate shared decision making into clinical practice
as a standard of person-centred care.
Page 22 | Supporting local practice
9 Supporting local practice
9.1 Demonstration
Practical demonstrations can be a good way to persuade skeptical people that SDM can be implemented in the
real world. It can also be the best way to identify practical problems and means of overcoming them. However,
the lessons are not likely to be learnt unless the demonstrations are carefully evaluated, allowing participants and
intended beneficiaries an opportunity to reflect on what they have achieved and what they might have done differ-
ently.
Establishing a successful demonstration requires careful planning. The Health Foundation, instigator, funder and
evaluator of numerous demonstration projects in the UK and elsewhere, lists ten challenges that should be con-
sidered and planned for (59) (figure 11).
Figure 11: Planning a shared decision-making demonstration project
Challenges
Possible solutions for SDM implementation
Convincing people that there is a problem
Many doctors think they already practice SDM role
play or videos of consultations can be used to con-
vince them that this is not the case.
Convincing people that the solution chosen is the
right one
There is a common assumption that patients do not
want to be involved in choosing treatments, so this
misperception must be dispelled.
Getting data collection and monitoring systems right
There is no consensus on the best way to measure
SDM, so measures must be selected carefully.
Excess ambitions and ‘projectness’
Embedding SDM into clinical workflows takes time.
It may be best to focus on a relatively discrete area
or single specialty and get that right rather than try-
ing to spread SDM across a whole system.
The organizational context, culture and capabilities
Staff may not understand their role in SDM imple-
mentation and what it involves. Help them to see it
in relation to the wider goals of the organization.
Tribalism and lack of staff engagement
Ensure that clinicians review and approve any mate-
rials given to their patients. Clarify people’s roles in
relation to SDM for example who will distribute
PDAs, who will provide decision coaching, adminis-
trative support, and so on.
Leadership
Offer train-the-trainers workshops in SDM skills and
ensure that clinical leaders are well-supported.
Supporting local practice | Page 23
Balancing carrots and sticks harnessing commit-
ment through incentives and potential sanctions
Intrinsic motivation may not be sufficient. Enlist sen-
ior executives and professional bodies to provide
encouragement and sanctions, where necessary.
Securing sustainability
Keep it simple. Identify future funding sources, if
necessary, and mobilise other mechanisms to em-
bed SDM into routine practice (e.g. computer
prompts).
Considering the side-effects of change.
Be vigilant about detecting unintended conse-
quences and deal with them when they arise, for
example if SDM consultations are taking too long,
offer preparation before the consultation.
The importance of taking time to engage all staff, clinicians and administrators, adapting workflows where neces-
sary, and applying constant evaluation and iterative improvements cannot be overestimated. Projects that do this
are much more likely to achieve their goals than those that do not (15, 40, 60-64).
SDM demonstration projects are currently under way in Australia, Canada, Denmark, Germany, the Netherlands,
Norway, Taiwan, UK, and USA. The following examples are particularly noteworthy:
Vejle Hospital, part of the Lillebaelt Hospital organisation in Denmark, launched an ambitious programme
in 2012 to further develop the hospital into a patient-centred, modern and highly specialised cancer hos-
pital with a primary focus on patients’ and relatives needs and preferences. To support this work they set
up a Centre for Shared Decision Making. The Centre is the result of a collaboration between various clini-
cal departments, the Danish Cancer Society and the University of Southern Denmark, with the aim of
developing and evaluating tools, training programmes and implementation projects across the hospital.
Prior to establishing the project the team visited various SDM demonstration sites in Canada, UK and
USA to learn from best practice elsewhere, and an international advisory group regularly reviews their
progress.
The Northern Norway regional health authority financed the development of a portal hosting PDAs and
guidance on implementation led by a team at the University Hospital of Northern Norway in Tromso. The
team has also developed a comprehensive implementation framework. Organised as a virtual production
site, the DA Factory is developing a systematic approach to SDM implementation which is now being rep-
licated in Kiel in Germany.
Participants in Taiwan’s national SDM programme have included 23 academic medical centres, 63 met-
ropolitan hospitals, and 79 local community hospitals. Together these 165 institutions have trained more
than 17,300 health professionals, and reached more than 100,000 people through their campaign materi-
als, health education activities and social media.
MAGIC was the UK’s largest SDM demonstration project to date. It was funded by the Health Foundation
and led by academic teams at Cardiff and Newcastle universities (58). Clinical teams from a variety of
services (primary care, breast cancer care, obstetrics, urology and ear, nose and throat) took part, includ-
ing 270 doctors, nurses and NHS managers. Activities included skills development and engagement,
guidance on developing, adapting and implementing PDAs, facilitation and peer support for clinical
teams, patient forums and the Ask 3 Questions campaign. The programme helped to consolidate learning
about the key implementation challenges and how these can be overcome (15).
In the US, the Informed Medical Decisions Foundation (previously known as the Foundation for Informed
Medical Decision Making) was founded in 1989 and worked for over two decades to advance evidence-
based SDM through research, policy, clinical models and patient decision support. Their medical editors
and clinical advisors came from prestigious academic medical centres and research groups. They estab-
lished a network of about 30 demonstration sites around the USA, with a learning collaborative dedicated
to embedding SDM in routine clinical care in a variety of settings (11, 62). The Foundation merged with
Healthwise in 2014. The research work now continues as the Informed Medical Decisions Program,
based at Massachusetts General Hospital, with core funding from Healthwise.
Page 24 | Supporting local practice
These demonstration projects reflect the increasing maturity of the field, which has progressed from an exclusive
focus on PDAs to an awareness that SDM is a complex intervention requiring a sophisticated approach to imple-
mentation and evaluation. Pooling the learning from the current international batch of demonstration projects
would help to put SDM implementation on an even firmer footing.
9.2 Measurement
9.2.1 Specially-designed measures
The ability to measure the extent to which SDM has occurred is crucial for identifying training needs, for audit and
feedback on the quality of consultations, and for evaluating tools, campaigns and demonstration projects. Ideally,
measures for routine use should be brief, easy to administer, simple to analyse and carefully tested for validity
and reliability. Where possible they should cover the main elements of SDM, though this presupposes agreement
on what these are (65).
Various instruments have been developed to assess the presence or absence of SDM. These broadly fall into two
types: patient reports and observer tools (66, 67). Patients’ descriptions of their experience of clinical decisions
are usually gathered via structured self-completion surveys, although more qualitative methods interviews and
focus groups can also be used. Observer tools are structured templates for analysing clinical conversations or
recordings (audio, video or typed transcript) of conversations. Some commonly-used instruments are listed in fig-
ure 12.
Figure 12: Selected instruments for measuring shared decision making
Name
Design
Content
Languages
Patient surveys
CollaboRATE (68-73)
Brief, post-consultation
questionnaire; 3 items -
0-9 rating scale
Explanation of the health
issue; elicitation of pa-
tient’s preferences;
integration of patient’s
preferences.
English, Danish, Span-
ish, Swedish
Decisional Conflict Scale
(74-91)
Also low literacy version
of DCS, and Decisional
Regret Scale
17 items - 5 response
options
Personal perceptions of
uncertainty; modifiable
factors; effective deci-
sion making.
Chinese, Danish, Eng-
lish, French, German,
Italian, Japanese, Span-
ish
Decision Quality Instru-
ments (92-97)
Versions for back pain,
breast cancer, cardiol-
ogy, colon cancer,
mental health, hip and
knee osteoarthritis, pros-
tate screening and
treatment, menopause
Decision-specific
knowledge; decision-
specific goals; involve-
ment in decision making.
English, Spanish
Supporting local practice | Page 25
SDM-Q-9 (98-101)
Physicians version also
available SDM-Q-doc
9-items, 6 response op-
tions
Doctor explained deci-
sion, options, pros and
cons; discussed prefer-
ences; supported
decision making pro-
cess.
Arabic, Czech, Danish,
Dutch, English, Filipino,
French, German, He-
brew, Italian, Japanese,
Korean, Mandarin Chi-
nese, Malay, Norwegian,
Persian, Portuguese,
Romanian, Spanish,
Thai, Turkish
SURE (74, 86)
A screening instrument
for decisional conflict
4 items - yes/no re-
sponses
Sure of best choice; un-
derstand information;
risk-benefit ratio; encour-
agement.
English, French
Patient experience sur-
veys
Single items within
longer patient surveys
Selected questions, for
example “were you in-
volved as much as you
wanted to be in deci-
sions about your care?”
Various
Observer tools
MAPPIN’SDM (102-104)
9 items 5 ratings
Rates interactions be-
tween doctor, patient
and observer.
English, German, Nor-
wegian
Observer Option-5 In-
strument (105-108)
Also 12-item version and
dyadic version
5 items 5 ratings
Clinician explains op-
tions; provides support
and reassurance; gives
information or checks
understanding; elicits
preferences; integrates
preferences.
Dutch, English
There is no consensus on which of these instruments is best. While brief patient-reported measures may appeal
to policymakers, many of these have strong ceiling effects that limit their discriminatory power. Ceiling effects oc-
cur when a high proportion of respondents give the best possible ratings, even when there are observed
variations in their experience of SDM. This may be because they have low expectations of involvement or be-
cause patients tend to be grateful for the care they receive and unwilling to criticise clinicians. Mode effects can
also be an issue. This is when the mode of data collection affects the results due to ‘social desirability bias’. For
example, telephone surveys tend to yield more positive results than mail or web surveys, so a comparison of data
collected in these different ways may be unreliable.
Observer methods can yield richer data on what goes on in consultations, but they rely on patients and clinicians
agreeing to allow a recorder into the intimate setting of a consultation room, and analysis of the data requires
Page 26 | Supporting local practice
special training and is time-consuming and expensive. These methods are unlikely to be used much outside of
research settings.
Another method that is used in some countries is to record the number of patients who are given access to PDAs
to inform their decisions. This type of measure is relatively simple to collect, but it presupposes that there are suf-
ficient PDAs available covering all relevant topics, and this is rarely the case. Also, as we have seen, SDM can be
carried out effectively without the use of PDAs, so this would produce only a partial measure of the extent of SDM
practice.
9.2.2 Patient experience surveys
Many countries and regional authorities carry out regular patient experience surveys to gain feedback on a variety
of healthcare quality issues. In some cases these include relevant questions that can be used to give an indica-
tion of patients’ views on the extent to which they were involved in decisions about their care; for example figure
13 shows results from a single question in the NHS national inpatient survey for England which has been running
annually since 2002.
Figure 13: Trends in response to a single ‘involvement’ question in NHS inpatient surveys in England
Interpreting single questions in cross-sectional surveys like this is challenging because people’s responses may
be affected by their expectations of involvement which could change over time. Nevertheless, the results from
these large-scale postal surveys, completed by more than 75,000 respondents each year, and carried out at a
time when patient involvement was a policy priority, are a clear demonstration of how hard it can be to make an
impact on mainstream practice of SDM. However, an analysis of the Medical Expenditure Survey in the US,
which includes seven questions of relevance to SDM found encouraging improvements between 2002 and 2014,
although socio-economic disparities persisted throughout the period (109).
Apart from these general patient surveys, routine measurement of SDM is rare as yet, and usually confined to
specific studies or demonstration projects. For example, Vejle Hospital in Denmark is testing the use of Collabo-
RATE, the Decisional Regret Scale and a Decision Quality Instrument for herniated disc; the SDM-Q-9
questionnaire has been widely used in Germany, the Netherlands, and several other countries; MAPPIN’SDM is
Supporting local practice | Page 27
used in Germany and Norway; in the UK the MAGIC project used adapted versions of the Decision Quality Instru-
ments, while the AQuA programme used a balanced score care including both SURE and CollaboRATE;
Observer Option has been used in the USA and several other countries.
9.3 Coordination and support
9.3.1 Fragmented development
In most countries work on SDM was initiated by academics, with an early focus on the development of PDAs
funded from ‘soft money’ fixed term grants. Interest in more comprehensive implementation strategies began to
grow when it became clear that these information and values clarification tools were insufficient on their own to
change the culture of care. Since then, as we have seen, a number of other players began to get involved and a
variety of initiatives were introduced in all the nine countries we have looked at.
However, in most of these countries efforts to promote SDM have developed in an ad hoc and uncoordinated
manner. This makes it hard for anyone interested, for example provider organisations or clinicians, to know where
to go to find support for implementing SDM in their organisations. It limits opportunities to learn from others’ expe-
riences and leads to wasted effort and resources.
Similarly, the development of PDAs proceeded in a largely uncoordinated fashion, led by the interests of the de-
velopers rather than any clear set of national priorities. Development of a good quality PtDA is a complex task,
involving identifying decision points, reviewing evidence, development of a prototype, testing with patients and
clinicians, and evaluating its use in real-life settings (56). Given the vast number of clinical decisions where there
is more than one feasible option and where patients should be involved, it makes little sense to duplicate efforts,
yet this is a common problem.
9.3.2 National coordination
There are several ways in which establishing a national coordination centre, or network of centres, could be use-
ful (figure 14).
Figure 14: Potential roles for a national SDM coordination centre
Strategy development
Convening stakeholder meetings to agree priorities and develop an imple-
mentation plan, liaising with politicians, policy organisations and funding
bodies.
Education and training
Developing core competencies for SDM, mapping training opportunities, en-
couraging the development of new training courses, shaping curricula,
designing assessments, promoting shared learning.
Tools
Coordinating the development of PDAs, producing a central register, quality
assuring PDAs, hosting these on a national portal, linking them to clinical
guidelines, ensuring they are kept up-to-date, establishing a certification
scheme, liaising with suppliers to build PDAs and SDM prompts into elec-
tronic medical record systems.
Campaigns
Organising conferences, designing social marketing campaigns, developing
and distributing materials, liaising with patient and professional organisa-
tions.
Page 28 | Supporting local practice
Demonstrations
Mapping, supporting and evaluating demonstration projects, summarising
and disseminating the learning from these, encouraging replication.
Measurement
Developing or selecting appropriate measurement instruments, monitoring
the state of SDM nationally, providing feedback and publishing regular re-
ports.
9.3.3 Collaborations
We found no examples of comprehensive national coordination centres along these lines, but several countries
are taking important steps towards a more coordinated model.
The Netherlands has benefited from strong ministerial interest, coupled with generous funding, enabling
the development of infrastructural support. However, it currently lacks institutional support for the devel-
opment and updating of PDAs.
Norway has also made great strides in a relatively short space of time, encouraged and funded by the
Ministry of Health. They have developed interesting tools, communications training and demonstrations,
but there is no central institution responsible for coordinating these as yet. The Ministry of Health has es-
tablished a process for approving PDAs, based on IPDAS criteria, and they will be placed on a national
portal.
The UK has a longer history of working on SDM, but their efforts remained fragmented and uncoordi-
nated until 2015 when the National Institute for Health and Clinical Excellence (NICE), working together
with NHS England, convened a group that has developed into a loose coordinating mechanism known as
the NICE SDM Collaborative (110). This involves a large number of organisations committed to taking
forward various actions to promote wider roll-out of SDM. As part of this initiative, NICE has recently an-
nounced their intention to develop clinical guidance on SDM, and NHS England has launched a new
SDM demonstration project focused on musculoskeletal conditions.
Taiwan comes closest to having a well-coordinated approach. Top down leadership by the Ministry of
Health and Welfare and the Joint Commission for Taiwan has been responsible for rapid progress to-
wards nationwide SDM implementation. Helped by the fact that they entered the field relatively late,
Taiwan was able to learn from experience in other countries and avoid repeating their mistakes. SDM
initiatives around Taiwan are coordinated by the Joint Commission, assisted by a single online resource
to provide support, and a system for quality assuring locally-developed PDAs. A national system of Q-
codes make it easy to prescribe PDAs. The Joint Commission keeps tabs on developments around the
country and uses conferences, workshops and competitive awards to incentivise local hospitals and en-
courage sharing of good practices. Campaign materials are developed centrally and available for use by
local leaders, as are training materials and workshops.
Recommendations for Germany | Page 29
10 Recommendations for Germany
SDM implementation in Germany benefits from a relatively high level of ministerial commitment and funding, sev-
eral internationally-respected academic groups with an interest in the topic, and professional and non-
governmental involvement from a range of organisations. There is considerable experience of developing and
evaluating PDAs and a national portal for hosting these is under development. Some interesting training initiatives
have taken place, several demonstration sites exist, and there are locally developed measurement tools. How-
ever, these initiatives have emerged in an ad hoc manner, with little coordination.
Consideration should be given to establishing a national SDM resource centre (or series of linked centres) with
the following objectives:
1. Map current activities in SDM implementation and draft a national implementation strategy for wide con-
sultation and adoption by stakeholder organisations
1. Agree priorities and secure commitments to action on SDM from policy, professional and patient stake-
holders
2. Ensure that every clinical student (in medicine, nursing, and allied health professions) receives appropri-
ate training in SDM skills and their performance is assessed
3. Map existing PDAs, establish a register, and agree a list of priority clinical topics for further development
4. Agree quality criteria for assessing PDAs and establish a mechanism for keeping these up-to-date, per-
haps linked to the development of clinical guidelines
5. Design and deliver social marketing campaigns aimed at promoting SDM to professionals, patients and
the public
6. Support the development of and evaluation of SDM demonstration sites and establish a means of sharing
the learning from these
7. Design a set of routine measures of SDM practice and encourage payers and provider organisations to
implement these and publish the results
8. Liaise with funding bodies to agree on priorities for further research and development
9. Offer practical support to local initiatives focused on SDM implementation.
Page 30 | Appendix: country summaries
11 Appendix: country summaries
These summaries do not claim to be comprehensive accounts of all SDM-related activities in these countries. I
owe a deep debt of gratitude to the people who helped me gather the information, including all the authors of the
ZEFQ special issue. However, the study relied on a fairly small number of interviews, supplemented by email
communications, web searches and literature reviews, so it is always possible that some relevant initiatives may
have been missed.
11.1 Australia
Health system
Health care in Australia is provided by both private and government organisations. Cen-
tral government is responsible for national health policy and for Medicare funding, but
hospital administration, community and public health, ambulance, public dental services
and mental health programmes are devolved to the seven state and territory govern-
ments.
Leadership
Policy
The Australian Charter of Healthcare Rights was formally adopted by the government in
July 2008. It applies to all health settings anywhere in Australia, including public and pri-
vate hospitals, general practice and other community settings. It specifies patients’ rights
to be informed about services, treatment options and costs in a clear and open way, and
to be included in decisions and choices about their care. Healthcare providers are ex-
pected to discuss available treatment options, expected outcomes, success rates and
incidence of side effects. They must also inform patients and consumers of their right to
refuse treatment or withdraw consent at any time.
The Australian Commission on Safety and Quality in Health Care (ACSQHC), a govern-
ment agency based in Sydney, introduced its national safety and quality health service
accreditation standards in 2011 and updated these in November 2017. They include a re-
quirement to partner with patients at individual, service and system levels, and to promote
shared decision making. The relevant standard, ‘sharing decisions and planning care’,
states that organisations must have processes in place for clinicians to partner with pa-
tients and/or their substitute decision maker (if the patient lacks capacity) to plan,
communicate, set goals and make decisions about their current and future care (111).
Guidance for hospitals suggests various ways in which this could be achieved, including
reviewing patients’ information needs, providing PDAs, question prompts and self-man-
agement support, and organising communication skills training for staff.
To support these goals, the ACSQHC has hosted symposia and launched national pro-
grammes on SDM, health literacy and partnering with consumers (17) . Their leaflet on
Top Tips for Safe Health Care encourages patients to ask questions, find good infor-
mation, and understand the risks and benefits of treatment options.
Meanwhile several state governments are developing strategies to encourage greater up-
take of SDM, including Victoria and New South Wales.
Professional
Apart from the patients’ rights charter, there are no other legal or financial incentives for
medical professionals in Australia to practice SDM, but several professional bodies view it
as an ethical and professional standard.
The Australian Medical Council’s (AMC) code of conduct for doctors, Good Medical Prac-
tice, explicitly endorses SDM: ‘Making decisions about health care is the shared
responsibility of the doctor and the patients’. The AMC also sets standards for medical
education and assessment, but whether SDM skills are taught or assessed, and if so,
how, is left up to individual medical schools and specialty societies.
Appendix: country summaries | Page 31
The latest edition of the Royal Australian College of General Practitioners (RACGP)
standards for GPs states: ‘Patients have the right to make informed decisions about their
health, medical treatments, referrals and procedures. You have a duty to provide infor-
mation that the patient can understand, and that is tailored to their individual needs’
(112).
Patient
Consumers Health Forum of Australia is the leading group representing consumer inter-
ests in health care, with member organisations from around Australia. Their mission is to
generate consumer-led ideas for a high quality and affordable health system centred on
the needs and preferences of consumers. Information on their website does not mention
SDM explicitly, but blogs and videos posted there include patients calling for greater in-
volvement in decisions about their care.
Infrastructure
Training
Despite evidence of growing demand for it, there is as yet no systematic approach to
SDM training and no agreement on the core competencies (17). It is up to individual med-
ical schools and specialist societies to decide what to teach and how to teach it.
However, the AMC’s standards state that medical graduates must learn how to ‘elicit pa-
tients’ questions and their views, concerns and preferences, promote rapport, and ensure
patients’ full understanding of their problem(s); involve patients in decision-making and
planning their treatment, including communicating risk and benefits of management op-
tions’ (17).
The University of Sydney, which has a strong Health Decision Group, is planning to ex-
pand its teaching and assessment of SDM competencies.
The ACSQHC and the RACGP have developed an online training module for doctors on
shared decision making and risk communication. The training modules are available to
RACGP members and anyone else via the RACGP website. The ACSQHC is also work-
ing with a steering group to develop adapted versions of the online module for specialist
colleges.
Tools
The Ask, Share, Know GP network, a collaboration between Bond University and The
University of Sydney, has been established to test and translate resources to improve up-
take of evidence-based practice and SDM. They produce evidence summaries and PDAs
to help GPs manage a variety of conditions.
Several other PDAs have been developed, but development and updating of these tools
has been ad hoc and uncoordinated. Many were developed for specific research projects,
and few have been widely disseminated after completion of the study. Exceptions are the
PDAs produced by ACSQHC on use of antibiotics, the RACGP’s patient decision aid on
screening for prostate cancer, and several PDAs developed by the University of Sydney’s
health decision group.
Bupa, the global commercial health insurance company which has an Australian subsidi-
ary, at one time offered PDAs developed by the US company, Health Dialog, but it is not
clear if these are still in use in Australia.
There are no plans to certify PDAs and as yet little discussion among policymakers on
how these might be quality assured. Researchers in the field are aware of the IPDAS
standards, but these are not mentioned on the relevant websites.
Campaigns
Since the publication of a landmark trial (113), there has been considerable interest in
Australia and further afield in encouraging patients to ask questions about their prognosis
and treatment options. More recent Australian trials have underscored the benefits of this,
recommending the use of the following questions: '1. What are my options; 2. What are
the possible benefits and harms of those options; 3. How likely are each of those benefits
and harms to happen to me?' (50, 114, 115). This approach has now been adopted by
Page 32 | Appendix: country summaries
Cancer Council Australia and Choosing Wisely Australia, both of which recommend
slightly different questions.
The ACSQHC partnered with HealthDirect Australia, the national public health portal, to
develop a ‘question builder’, encouraging patients to ask relevant questions about their
health problems and treatment in specific settings.
Practice
Demonstration
The Health Decision Group at Sydney University is involved in a number of research pro-
jects, including local feasibility studies based in general practice and studies of the effects
of low health literacy. Together with colleagues at Bond University, they have obtained a
5-year programme grant to develop research and evaluation of SDM initiatives. Their
Ask, Share, Know website includes decision aids and question prompts, and they are
working with primary health networks in Australia, China and Myanmar.
The Agency for Clinical Innovation in New South Wales is currently developing a strategy
to implement SDM across the state.
Measurement
There is no direct measurement of the extent to which SDM is occurring across the coun-
try and no consensus on appropriate measures, but some work on measurement is under
way linked to hospital accreditation programmes in different states, for example Victoria
and New South Wales.
Practice variations are monitored and published in the Australian Atlas of Healthcare Var-
iations. ACSQHC has explicitly included SDM among their recommended strategies for
tackling unwarranted variations.
The New South Wales Bureau of Health Information conducts a regular patient survey
which includes a question about involvement in decisions. In 2014, 60% of hospital inpa-
tients said they were definitely involved as much as they wanted in decisions about their
care, but a quarter of those receiving new medicines were not told about the side-effects.
Coordination
There is no central coordinating function for work on SDM, no central register or national
portal for hosting PDAs, and no dedicated funding source for further development of
these. The fact that Australia has made progress towards wider use of SDM is due in
large part to the efforts of academics and their success in obtaining funds for SDM stud-
ies.
Overview
The policy climate in Australia is positive for SDM and professionals are becoming inter-
ested. There has been some effective national leadership, notably from the ACSQHC, but
implementation of SDM has been patchy and largely uncoordinated to date.
Appendix: country summaries | Page 33
11.2 Canada
Health system
Responsibility for healthcare provision is devolved to the ten provinces and three territo-
ries that make up Canada. The provincial and territorial governments are responsible for
the management, organization and delivery of care services health, while the federal gov-
ernment sets standards and provides funds through the publicly-funded Medicare system.
The federal government also provides services for certain specific groups, including First
Nations people and the military.
Leadership
Policy
Canada has a long history of supporting SDM research, mainly through the Canadian In-
stitutes of Health Research, and two leading Canadian research groups have influenced
policy developments and implementation, both nationally and internationally.
The Ottawa Patient Decision Aids Research Group began work in 1989 and since then
they have launched the Ottawa Decision Support Framework, developed the Ottawa De-
cision Support tutorial, created a global inventory of PDAs assessed against IPDAS
criteria, and led and regularly updated the Cochrane review on the effects of PDAs (9).
Their bilingual website, which also includes a generic personal decision guide for use in
any situation, attracts large numbers of visitors from around the world and is now availa-
ble in English, French, Swedish, Dutch, Danish, Spanish, German and Japanese. Prof
Dawn Stacey, who leads this work, is the Canada Research Chair in Knowledge Transla-
tion to Patients.
Prof France Legaré, Canada Research Chair in Shared Decision Making and Knowledge
Translation, is based at the Centre for Research on Primary Care and Services at Laval
University, Quebec. She leads the Laboratory for the Implementation of Shared Deci-
sion Making in Primary Care, led the Cochrane review on interventions for improving the
adoption of shared decision making by healthcare professionals (36), and has developed
an inventory of programs and training activities dedicated to shared decision making.
Saskatchewan, one of the country’s smallest and least populous provinces, was the first
to develop a strategy for implementing SDM across the province (18, 116). Their Patient
First initiative included implementing SDM as one of its main goals.
Professional
The College of Family Physicians of Canada has called for a patient-centred approach to
care, stating: “patients, their families, and their personal caregivers should be listened to
and respected as active participants in their care decisions and their ongoing care” (117).
A number of specialty groups have instituted collaborative research projects in SDM in
areas such as elder care, paediatrics, emergency and critical care medicine, cardiology,
nutrition, arthritis, occupational therapy, and social care (18).
The Canadian Task Force on Preventive Healthcare has a patient engagement strategy
for its guidelines programme and is beginning to promote SDM (118) .
There are currently no direct legal or financial incentives for clinicians in Canada to prac-
tice SDM.
Patient
Patients Canada campaigns for improvements in patients’ experience, but SDM has not
been a specific focus of their work. While it seems that no Canadian patient organisations
have majored on SDM, various individual patient leaders have been prominent in calling
for it.
Page 34 | Appendix: country summaries
Infrastructure
Training
SDM training for clinicians is not coordinated across Canada and not specifically as-
sessed in the exams for medical students, residents or specialists. Little is known about
the extent to which SDM skills are taught, or who receives such training.
The University of Montreal’s medical school has initiated a major patient partnership initi-
ative, including a pioneering project to integrate patient-partners into oncology teams, at
both clinical and organizational levels.
The University of British Columbia’s Patient and Community Partnership for Education
works to promote a partnership model of client-health professional communication in line
with current trends in health care including evidence-based practice, client-centred care
and informed and shared decision making.
The Ottawa Decision Support tutorial, an online training programme that has been pub-
licly available since 2007, includes a knowledge test that has been completed by 6,500
users to date.
Tools
The Ottawa Hospital Research Institute’s global A-Z Inventory of PDAs provides links to a
large number of PDAs covering nearly 150 different conditions
Laval University produces the decision box, an evidence-based summary of the most im-
portant benefits and harms of a health care intervention. The clinician version of the
Decision box prepares healthcare professionals to translate evidence to patients, an es-
sential step to evidence-based practice and shared decision making. The patient
version is a PDA to support discussion between patients, their health care providers and
their family relatives.
A US not-for-profit company Healthwise, markets their information products in Canada.
These are used in several provinces, including Alberta, British Columbia and Saskatche-
wan, but the extent to which the SDM elements of their package are used in Canada is
not known.
Other decision aid producers include academic groups such as the Ottawa Patient Deci-
sion Aids Research Group, the Centre for Research and Primary Care Services in
Quebec, and the Decision Sciences Programme at the University of British Columbia.
Many of the PDAs produced by academic groups were designed for use in specific re-
search studies and are not available for wider use.
Health Quality Ontario produces clinical quality standards and is intending to develop pa-
tient decision aids to complement these.
Apart from Healthwise, there is currently no Canadian organisation dedicated to produc-
ing PDAs and keeping them up-to-date.
Campaigns
Choosing Wisely Canada aims to reduce unnecessary care by promoting better conver-
sations between patients and clinicians. It’s More is not always better campaign uses
advertising techniques to encourage patients to talk to doctors about when they might
need a particular test or treatment and when they don’t. Many of the priority lists submit-
ted by specialty societies recommend shared decision making. Choosing Wisely Canada
also hosts the international secretariat for Choosing Wisely which is promoting patient in-
volvement in decisions about their care (119). They also produce campaign materials,
including posters and videos, to encourage patients to ask four questions: Do I really
need this test, treatment or procedure? What are the downsides? Are there simpler, safer
Appendix: country summaries | Page 35
options? What happens if I do nothing? But these questions are focused on reducing
over-treatment rather than providing balanced information (120).
Practice
Demonstration
The Saskatchewan Surgical Initiative introduced SDM into specific clinical pathways, in-
cluding hip and knee replacement, prostate cancer screening, spine and pelvic floor
problems (121).
Since 2009 the Children’s Hospital of Eastern Ontario has implemented a hospital-wide
programme to provide paediatric PDAs and training for health professionals (18).
Measurement
In 2015 the Canadian Institute for Health Information (CIHI) launched a pan-Canadian pa-
tient experience survey. This includes the following question: Were you involved as
much as you wanted to be in decisions about your care and treatment? No results have
been published yet, but when they are this may give an indication of the extent to which
SDM is practised across Canada.
Meanwhile patient surveys have been undertaken in various Canadian provinces reveal-
ing shortfalls in SDM practice. For example, a 2016 survey report from Quebec found that
only 35% of family physicians claimed to discuss treatment options with their patients,
compared to 67% in the UK, and Quebec patients were less likely to feel involved in treat-
ment decisions, with only 60% of those aged over 55 saying they were, compared to 76%
in Switzerland (122).
The Ministry of Health in Saskatchewan uses the SURE instrument to screen for deci-
sional conflict in surgical pathways as part of their Patient First programme.
Coordination
There is no central coordinating function for work on SDM and no dedicated funding
source for further development of these. However, the Ottawa Hospital Research Insti-
tute’s inventory of PDAs and their other materials play a key role in disseminating
learning about SDM, not just in Canada but also internationally.
Overview
Much of the impetus to implement SDM in Canada has come from academic groups to
date. While some provinces have made progress, there has been no attempt to coordi-
nate initiatives across the country, professional leadership has been relatively weak,
patient/public leadership non-existent and there is a lack of infrastructure support. How-
ever, change is in the air and the desire for greater involvement in decisions is becoming
more apparent.
Page 36 | Appendix: country summaries
11.3 Denmark
Health system
Healthcare in Denmark is funded through taxation and available to all free at the point of
use. Local services are administered and coordinated by five regional health authorities.
Leadership
Policy
The Danish Health Act states that patients must receive complete information about their
treatment and give their explicit consent to receive it.
The Danish Ministry of Health is actively promoting the use of patient-reported outcomes
and PDAs (19). In 2016 they provided funds of 40 million Danish kroner (€4m) to support
28 specific decision support projects at various Danish hospitals and municipalities.
The fourth version of the Danish Cancer Plan, published in 2016, included a strong focus
on SDM and PDAs. In support of this the government made funding available amounting
to 22 million DKK (€2m) for the development of PDAs for cancer patients.
Professional
The Danish Association of Junior Hospital Doctors, in collaboration with the Danish Pa-
tients knowledge centre, ViBIS, has launched a programme to train doctors as
‘ambassadors’ or change agents to spread the word about SDM among their colleagues.
To date 62 ambassadors have been trained.
Patient
Danish Patients is an umbrella organization for 83 patient associations in Denmark, rep-
resenting a total of 885,000 individual members. ViBIS, their knowledge centre for patient
involvement in healthcare, has been a strong influence on the development of SDM in
Denmark. They are currently working with Aarhus University Hospital to implement a pro-
ject to roll out SDM and patient involvement across different departments. When the work
is completed, in 2018, they plan wider dissemination including PDAs and an implementa-
tion manual.
Infrastructure
Training
SDM is not yet included in medical curricula on a systematic basis, but some medical
schools include it as part of communications skills training. The University of Southern
Denmark is planning to introduce training on SDM for pre-clinical students from 2018.
ViBIS has developed a series of training courses and skills-building workshops in SDM
targeted at specific groups of health care professionals, including the junior doctors am-
bassadors programme mentioned above.
In Vejle Hospital a one-day in-service training course for clinicians in how to communicate
and do shared decision making with patients has been developed as an add-on to the
hospitals existing three-day mandatory course on general patient communication (123).
Aarhus University provides a course in patient involvement for medical graduates.
Tools
Few PDAs have been developed and tested in Denmark as yet and translating existing
international tools into Danish is not always feasible, so the Centre for Shared Decision
Making at Vejle Hospital is working with the Design School at Kolding to develop a Dan-
ish platform. This takes the form of a generic template for PDAs that can be populated
with relevant data for a variety of different decisions. The design and content of the PDAs
are being carefully tested with patients in different demonstration projects within the hos-
pital. The PDAs are carefully designed to meet the IPDAS criteria.
In 2012, with the support of Trygfonden and Danish Regions, the Danish Society for Pa-
tient Safety instituted the production of a decision support tool in the form of a video for
patients with osteoarthritis of the knee, who are about to make a decision about knee re-
placement. The video was produced in collaboration with the Department of Orthopaedic
Appendix: country summaries | Page 37
Surgery at Gentofte Hospital and the Department of Orthopaedic Surgery at Aarhus Uni-
versity Hospital. An evaluation confirmed the findings of other studies abroad: The more
information patients have about alternative options to surgery, the more they decline the
surgical option.
Campaigns
Hello Healthcare, a cooperation between Danish Foundation TrygFonden and the Danish
Society for Patient Safety, developed a tool Just Ask a small booklet of questions other
patients have found helpful in their care, such as, “Could you please explain it another
way?” “Is there an alternative?” and “Could my wife be present during rounds?”
Vejle Hospital is working with the Design School at Kolding to develop question prompts
promoted via posters and videos in the hospital waiting rooms.
Practice
Demonstration
Vejle Hospital, part of the Lillebaelt Hospital organisation, is a cancer and university cen-
tre in the Central Denmark Region. In 2012 they launched an ambitious programme to
further develop the hospital into a patient-centred, modern and highly specialised cancer
hospital with a primary focus on patients’ and relatives’ needs and preferences. To sup-
port this work they set up a Centre for Shared Decision Making. The Centre is the result
of a collaboration between various clinical departments, the Danish Cancer Society and
the University of Southern Denmark, with the aim of developing and evaluating tools,
training programmes and implementation projects across the hospital. Prior to establish-
ing the project the team visited various SDM demonstration sites in Canada, UK and
USA, and an international advisory group regularly reviews their progress.
Measurement
The Danish Cancer Society conducted two large patient surveys in 2011 and 2013. The
2011 survey found that the majority of patients wanted to make decisions about their
treatment in partnership with doctors but a significant proportion did not feel sufficiently
involved. The 2013 survey found that the situation had improved slightly, with more pa-
tients feeling involved.
Vejle Hospital is testing the use of the CollaboRATE questionnaire to measure SDM in
clinical care. They are also using a Danish translation of the Decisional Regret Scale and
the Decision Quality Worksheet for Herniated Disc developed at Massachusetts General
Hospital in Boston.
The National Danish Survey of Patient Experiences, organised by the Centre for Patient
Experience and Evaluation in the Capital Region of Denmark, includes the following
question: To what extent were you involved in the decisions that were to be made re-
garding your care and treatment? In 2016 between 10% and 27% of patients responded
that the staff "not at all" or only "slightly" allowed them to participate in decisions about
their treatment and care, and up to half reported poor communication about the benefits
and harms of various treatment options.
Coordination
There is as yet no central organisation to coordinate SDM initiatives and no central regis-
ter of PDAs or national portal to host them. However, Denmark is a small country and
there is some informal collaboration between leaders in several hospitals and academic
groups.
Overview
Efforts to implement SDM in clinical practice in Denmark began only recently, for example
the work at Vejle Hospital began in November 2014, but their progress has been impres-
sive. Government funding has provided an important boost. As yet there is no central
coordinating function for the work and no central register or national portal for hosting
PDAs. Development and spread of SDM is still at an early stage, but strong patient lead-
ership and well-based initiatives in Aarhus and Vejle mean that progress has been fast
relative to many other countries.
Page 38 | Appendix: country summaries
11.4 Germany
Health system
German health care is funded by statutory health insurance provided by ‘sickness’ funds
that are used by 86% of the population, while 11% are covered by private health insur-
ance companies. Responsibility for administering the health care system is shared
between national (federal) and 16 state (Länder) levels, with decision-making devolved to
self-governing bodies.
Leadership
Policy
There has been high level support for person-centred care from the Federal Ministry of
Health, the Federal Ministry of Education and Research, and several other policy bodies
(20). The Ministry of Health provided the first funds for research into SDM in 2001-2005.
Following that a large research programme was launched in 2008 involving different min-
istries, insurance companies and the German statutory pension scheme. This provided
more than 20 million euros to fund about 70 research projects on patient involvement in
care.
The right to clear comprehensive information and to make informed decisions is en-
shrined in the Patients’ Rights Law of 2013.
The next update of the National Cancer Plan aims to improve the quality of patient infor-
mation, to involve patients actively in making decisions about their care, and to implement
SDM in clinical practice. There is also a commitment to provide balanced and unbiased
information on the benefits and harms of cancer screening programmes. Funds have
been made available to study how best to achieve these goals.
The Institute for Quality and Efficiency in Health Care (IQWiG), an independent, non-gov-
ernmental, not-for-profit foundation that carries out health technology assessments,
provides evidence-based health information for patients and public including some PDAs
(e.g. on cancer screening) on its national portal.
Several government agencies and independent national bodies have provided funds for
SDM research, including the Ministry of Health, the Ministry of Education and Research,
German Cancer Aid, the German Pension Fund, the German Research Foundation,
health insurers, and several foundations.
Professional
Most medical specialist societies are aware of SDM but haven’t yet taken a leadership
role. However the Association of Scientific Medical Societies (AWMF), representing 175
specialist societies, actively promotes SDM and several of their member organisations
have produced patient information materials linked to clinical guidelines. AMWF also
hosts the German Choosing Wisely campaign.
The German Network for Evidence-Based Medicine (DNEbM) aims to ensure that all pa-
tients and citizens receive healthcare based on best evidence and are able to make
informed decisions. It has produced a manual on Good Practice for Health Information.
The Agency for Quality in Medicine (AZQ) develops and publishes National Disease Man-
agement Guidelines with linked patient guidelines, and reliable and comprehensible
information for patients based on evidence reviews and studies of patients’ preferences.
German Cancer Aid and the German Cancer Societies are financing patient guidelines
for most of the oncological entities, developed with methodological support from the
Agency for Quality in Medicine (ÄZQ).
There are no direct financial incentives for clinicians to practice SDM.
Patient
Patient organisations play an important role in policy development in Germany and many
of these, e.g. in cancer and mental health, are well networked with policymakers. They
have an influential political role as participating organizations within the Federal Joint
Appendix: country summaries | Page 39
Committee. Most patient groups have called for greater patient engagement on a broad
level, but none is specifically campaigning for SDM.
Infrastructure
Training
The National Competence-Based Catalogue of Learning Objectives for Undergraduate
Medical Education (NKLM) includes SDM and most medical schools in Germany now in-
clude some element of training on SDM in their curricula. However, this is not necessarily
extensively taught and assessment may be based on only two or three multiple choice
questions.
Some medical schools have gone further and introduced training in practical skills for
SDM. In Hamburg medical school every student receives SDM training in the fourth se-
mester and this is assessed with a specially-designed Objective Structured Clinical
Examination (OSCE).
Heidelberg medical school also teaches SDM skills in three mandatory modules.
Discussions have taken place about extending SDM training to postgraduate training
schemes, but there has been little progress to date.
Tools
A number of organisations have developed PDAs including IQWiG, AZQ, Bertelsmann
Foundation, the Harding Center for Risk Literacy and various academic groups and
health insurance companies (20).
IQWiG, which is developing a national portal for patient information, is planning to de-
velop a central register of PDAs on a national portal and they hope to introduce a more
coordinated approach to the development of PDAs. As yet there is no independent certi-
fication scheme specifically for PDAs in Germany, but the proposed national portal may
include an assessment of the quality of these tools.
There have been few attempts as yet to integrate PDAs into electronic medical records,
but the Arriba-lib project in primary care is one example. This electronic library of PDAs
for use in general practice was funded by the Federal Ministry of Education and Research
(BMBF) (124-127).
PDAs have also been produced for people with mental health problems by the Hamburg
Network for Mental Health (128).
The Bertelsmann Foundation has developed a ‘White List’ public portal for PDAs that is
evidence-based and regularly updated. This is linked to the foundation’s work on medical
practice variations, the Healthcare Fact Check or Faktencheck Gesundheit.
A task force set up by DNEbM published standards for the development of evidence-
based health information, emphasising the need to base it on (a) a systematic literature
search, (b) justified selection of evidence, (c) unbiased reporting of relevant results, (d)
appropriate factual and linguistic communication of uncertainties, (e) either avoidance of
any direct recommendations or a strict division between the reporting of results and rec-
ommendations, (f) consideration of current evidence on how to communicate figures,
risks and probabilities, and (g) transparent information about the authors and publishers
of the information, including funding sources (129).
Campaigns
The Coalition for Patient Safety (APS) provides safety tips and encourages patients to
ask questions about their medical care.
Page 40 | Appendix: country summaries
Practice
Demonstration
The University Medical Centre in Hamburg hosts a number of projects designed to em-
bed SDM in clinical practice, including an implementation project in cancer care in
conjunction with other medical centres. Most implementation projects, here and else-
where in Germany, have been established as part of research programmes.
A large implementation project has recently been launched in Kiel to replicate an SDM
project in Norway. This has been allocated 13.6 million euros from the German Innova-
tion Fund and includes development of PDAs, training in SDM skills, measurement and
evaluation.
Measurement
The SDM-Q-9 questionnaire (including versions for both clinicians and patients), which
was originally developed in Germany and has now been translated into many other lan-
guages, has been used in several projects to determine if SDM occurred. A number of
other measures have also been adapted and used but there is no agreement on which is
the best instrument.
Surveys to determine the extent to which SDM is practised in Germany have painted a
mixed picture, ranging from 25% to 80% of patients saying they had an opportunity to
participate in decisions about their care (20).
Coordination
A relatively large number of initiatives have taken place in Germany to promote the adop-
tion of SDM, but these efforts have been somewhat fragmented. There is no single
coordinating body for SDM implementation and as yet no central register of PDAs, though
this is planned.
Overview
There has been an impressive amount of investment in SDM and some strong national
leadership, generating a great many activities, including training, tools development,
measurement and implementation, but these activities have not been very well coordi-
nated to date.
Appendix: country summaries | Page 41
11.5 Netherlands
Health system
Healthcare in the Netherlands is mainly financed through compulsory health insurance
contributions from citizens, with additional funds from general taxation. The not-for-profit
sickness funds provide cover for all types of care Most hospitals are independent not-for-
profit organisations. General practitioners act as gatekeeper to specialist care.
Leadership
Policy
There is strong commitment to SDM from the Ministry of Health led by the previous Minis-
ter of Health, partly based on the belief that it is the right way to go for ethical reasons,
partly due to critical reflection on how evidence-based medicine had been interpreted in
an inflexible way, leaving no role for patients, and also perhaps because of a hope that
encouraging ‘wiser choices’ would lead to lower costs.
The latest version of the Dutch Act of Agreement on Medical Treatment (WGBO) requires
health professionals to provide information on the benefits and harms of treatment op-
tions. It also formalises patients’ right to access their medical records and to audiotape
consultations.
Two major international conferences that took place in the Netherlands the International
Shared Decision Making (ISDM) conference in Maastricht in 2011 and the European As-
sociation of Communication in Healthcare (EACH) in Amsterdam in 2014 led to
increased awareness of the importance and complexity of SDM (21).
In 2013 the Council for Public Health and Health Care (RVZ) published a report entitled
The Participating Patient which called on the government to Improve the reliability of,
and access to health information that outlined the pros and cons of medical interventions;
to develop and implement PDAs; to uphold patients’ right to demand an individual care
plan; and to reward the effort that care providers make to involve patients in decision-
making.
Through the Healthcare Institute, the Ministry of Health has provided grants of five million
euros for five years to improve transparency and patient-centredness, including SDM,
leading to several implementation projects. The Netherlands Organisation for Health Re-
search and Development has also provided funds for this purpose.
The Ministry of Health has announced the provision of a specific registration code for use
from January 2018 to finance the extra time needed for SDM consultations (21). This
should counter the tendency to rush patients into a decision as a result of the strong em-
phasis on speed and efficiency in redesigned clinical pathways.
Professional
There has been strong collaboration between the Federation of Medical Specialties, the
College of General Practitioners and the Dutch Federation of Patients’ Organisations. In
2012 the Dutch College of General Practitioners (NHG) launched a public website con-
taining evidence-based information to complement their clinical guidelines, together with
PDAs. It has since grown to become one of the most visited health care sites in the Neth-
erlands, and a study has shown that it led to a 12% decline consultations two years after
the launch (130).
Despite these and other initiatives by various organisations, SDM is not yet universally
practised and still meets resistance from some doctors.
Patient
There is strong support for SDM among Dutch patients. The Dutch Federation of Pa-
tients’ Organisations has actively campaigned for SDM. Since there is no easy way to
Page 42 | Appendix: country summaries
translate the English term into Dutch, they proposed using the active verb ‘samen beslis-
sen’ making decisions together, and this has been widely adopted (21).
Breast cancer organisations are also pushing strongly for SDM.
Infrastructure
Training
Pre-clinical students in the Netherlands usually receive a basic introduction to SDM, but
the way in which this is taught varies between institutions.
Maastricht University is working to develop a national set of core competencies for SDM
training. A list of 20 competencies has been agreed and assessment tools are being de-
veloped. The intention is to use video and/or audio tapes to check on SDM skills.
Maastricht University Medical Centre will introduce the new programme for postgraduate
trainees in all specialties, starting with family medicine.
There is some evidence of locally-developed training programmes in SDM being spread
more widely; for example, a programme developed in Leiden University Medical Centre is
now being used by a number of implementation projects.
Tools
2011 saw the launch of the Med-Decs website providing links to PDAs developed in the
Netherlands and internationally. Its collection now includes PDAs developed for patients
in 22 disease areas.
The Ministry of Health financed the development of national guidance on quality criteria
for patient versions of clinical guidelines and PDAs.
The Dutch Federation of Patients’ Organisations and the Federation of Medical Special-
ties have worked together to develop Consult Cards, brief PDAs covering frequently
asked questions about specific treatment options.
and they coordinate patient participation in the development of PDAs together with spe-
cialty groups (21).
The Dutch Cancer Society has developed a portal that includes PDAs for cancer patients.
A number of academic groups have developed PDAs including the Amsterdam Medical
Centre.
There have not yet been any attempts to integrated PDAs into electronic medical records,
but Maastricht University Medical Centre has a project that is building in prompts to offer
PDAs to breast cancer patients.
Campaigns
The Dutch Federation of Patients’ Organisations and the Federation of Medical Special-
ties launched a national campaign entitled Improved Care Starts with a Good
Conversation to build awareness of SDM among both patients and clinicians. They also
launched an Ask 3 Questions campaign that is used in approximately half of all Dutch
hospitals.
Some healthcare insurers are taking steps to actively promote SDM by including it in hos-
pital contracts, and by promoting the use of Ask 3 Questions materials (21).
Practice
Demonstration
Initiatives to implement SDM are under way in 12 of the 80 Dutch hospitals and in primary
care (21).
Appendix: country summaries | Page 43
Measurement
Dutch versions of SDM measurement instruments such as Option 5, SDM-Q-9, Collabo-
RATE, and decisional regret have been produced and validated (21).
National patient surveys carried out on behalf of the insurance companies include ques-
tions of relevance to SDM including “Did the healthcare provider inform you about the
pros and cons of the treatment?”,and “Were you involved in decisions about your treat-
ment?”. Results are available from the survey company on request.
The Dutch Consumer Quality Index also includes questions on patient involvement.
The Dutch government has granted funds to develop better measures of patient participa-
tion and these are currently in development.
Coordination
The Netherlands has a more solid infrastructure to support SDM than exists in many
other countries, but they still lack institutional support for the development, updating and
evaluation of PDAs.
Many PDAs have been developed by both public and commercial bodies, but up to now
there has been no coordination of these initiatives and uptake among clinicians seems to
have been fairly low (21). The international portal for PDAs, Med-Decs, has both Dutch
and English versions making it relatively easy to find these tools.
Despite separate development initially, there is growing awareness of the similarities be-
tween personalised care planning for people with complex long-term or chronic conditions
(goal-setting and action-planning) and SDM (mainly focused on acute conditions and dis-
crete choices), with the aim of promoting ‘positive health’, in line with the WHO definition
of health (21).
Overview
The Netherlands has made more progress than most countries in promoting and support-
ing SDM, benefiting from strong ministerial leadership and good collaboration between
patient and professional bodies. There has been impressive progress in some clinical ar-
eas, in particular mental health care, primary care and long-term care, but getting SDM
embedded into hospital specialties has proved challenging.
Page 44 | Appendix: country summaries
11.6 Norway
Health system
Health care in Norway is funded out of taxation and partially de-centralised. The public
hospitals are owned by central government but administered by four regional health au-
thorities (RHAs), while primary care is provided in 426 municipalities with GPs acting as
gatekeepers to secondary care.
Leadership
Policy
The Directorate of Health (DH), a specialized agency under the Ministry of Health and
Care Services, issues clinical guidelines, coordinates 18 patient ombudsmen, and admin-
isters the national strategy for health information technology among other things.
Patient empowerment is firmly on the policy agenda - the National Health and Hospital
Plan 2016-2019 lists empowering patients as the first of its seven goals (22).
The 1999 Patients Rights Act confers on individuals a procedural right to participate in
treatment choices, be informed and make his or her own medical decisions.
There is strong leadership from the Ministry of Health and in particular from the current
Minister, who is very keen on SDM. In 2015 the RHAs were told: “Patients require help to
involve themselves more actively in decisions about their own treatment. By use of SDM
patients choose in cooperation with health personnel the extent and the way they wish to
go. The purpose is to agree on the alternative which best fits the patient’s values.” (22)
Two of the four RHAs have funded SDM implementation projects costing about 50 million
Norwegian Kroner (€5.2 million).
SDM has been incorporated into clinical pathways for cancer recently published by the
DH.
Professional
There is considerable interest in SDM among Norwegian doctors but most of the push for
implementation has come from the Ministry and from academic groups rather than from
specialty societies.
The usual barriers to SDM are present in Norway perceived lack of time, lack of skills,
lack of obvious patient demand, and a feeling that they do it already. There are no finan-
cial incentives for Norwegian doctors to practise SDM.
Patient
Most Norwegian patient groups are campaigning for greater involvement, but none has
specifically shown leadership in relation to SDM.
Infrastructure
Training
Apart from basic communication skills training, SDM is not taught in any depth in under-
graduate medical education, but Norway has now introduced mandatory communication
skills training and supervision for doctors during their postgraduate specialist training.
The Oslo Communication in Healthcare Education and Research group (OCHER) has
been conducting research into SDM skills and how they can be taught. They demon-
strated that it is possible to improve specialists’ communication skills with the use of a
short (two days) course based on the Four Habits model for clinical consultations devel-
oped at Kaiser Permanente in the US - Invest in the Beginning, Elicit the Patient’s
Perspective, Demonstrate Empathy, and Invest in the End (131, 132). This study influ-
enced the Ministry’s decision to introduce mandatory postgraduate training. The OCHER
team see SDM as the last and most complex habit that doctors must learn. This involves
major culture change, so it must be carefully taught and continually reinforced a long-
term project.
Appendix: country summaries | Page 45
A meta-curriculum for training health personnel in SDM communication, klarforsamvalg
(ready to SDM), has been developed by the team in Tromso. This aims to provide the ba-
sis for development of the mandatory postgraduate training in communication skills and
SDM.
Tools
The DH has adopted a standard set of quality criteria for PDAs based on IPDAS (22).
PDAs developed by the University Hospital of North Norway have been published on the
My Treatment Choices website and this will shortly be incorporated into the national
health information portal Health Norway.
Another website, DECIDE Treatment, currently being developed by a team from the Uni-
versity of Oslo, aims to support shared decision making and care planning for people
with long-term conditions to self-manage their health (133). This platform has been de-
signed for use with multiple clinical topics and includes tools called Health Helpers to
support a variety of decisions.
Oslo University Hospital hosts the Center for Shared Decision Making and Collaborative
Care Research, which combines e-health research and innovation with the overall goal
to improve shared decision making, illness management, self-management and patient-
centered collaborative care. They have a special focus on electronic mechanisms for sup-
porting SDM, aimed at supporting patients, clinicians and carers (133).
MAGICapp is a tool for developing and publishing structured electronic guidelines, evi-
dence summaries and PDAs developed by a team based at the University of Oslo in
collaboration with a number of international organisations and research groups. It is early
days yet, but it holds out the possibility of automated development of PDAs alongside
clinical guidelines (43).
Campaigns
The DH has launched a Just Ask programme, based on the Australian Ask Share Know
initiative, to encourage patients to ask questions about their treatment.
Practice
Demonstration
The Northern RHA financed the development of a portal hosting PDAs and implementa-
tion strategies led by a team at the University Hospital of Northern Norway in Tromso.
The team at the University Hospital of North Norway has also developed a comprehen-
sive implementation framework. Organised as a virtual production site, the DAfactory is
developing a systematic approach to SDM implementation which is now being replicated
in Kiel in Germany (22).
The South-Eastern RHA has funded the development of PDAs, a website, e-learning and
implementation support.
Three or four years ago the Haraldsplass Deaconess Hospital in Bergen adopted a hospi-
tal-wide approach to improving communications with patients which is now showing some
effects.
Measurement
A standardised measure of SDM, MAPPIN’SDM, has been translated into Norwegian,
validated and used in various local projects (102, 103).
PasOpp is a national patient experiences survey run by the Norwegian Institute of Public
Health which includes relevant questions.
The Consumer Ombudsman carries out regular patient surveys and these may give an
indication of the extent to which patients feel they are involved in their care.
Coordination
Norway has seen several interesting initiatives to develop tools, communications training
and demonstrations. There is no central institution responsible for coordinating these as
yet, or for ensuring they are kept up-to-date, but the Ministry of Health has established a
Page 46 | Appendix: country summaries
process for approving PDAs, based on IPDAS criteria, and they will be placed on a na-
tional portal. The strong lead from the Ministry of Health means Norway is well placed to
develop a coordinated approach to SDM implementation.
Overview
Despite the establishment of several strong initiatives in tools development, communica-
tions training and implementation strategies, the impact of these on clinical practice has
been relatively minor to date. However, it is early days and Norway is working hard to
produce a more comprehensive and better coordinated system for launch in the near fu-
ture.
Appendix: country summaries | Page 47
11.7 Taiwan
Health system
Taiwan has a single-payer national health insurance system jointly financed by payroll
contributions from employers and employees and government subsidies (23). Healthcare
is delivered by a public-private mix of 485 hospitals and 21,845 clinics and administration
costs are low. There is no gatekeeping function, consultation rates are high by western
standards and visits are short (134). This has led to rising levels of dissatisfaction among
patients and burnout among doctors (135, 136).
Leadership
Policy
The Taiwan Ministry of Health and Welfare (MOHW) is strongly committed to patient
safety, evidence-based medicine (EBM) and patient-centred care and SDM is seen as an
important aspect of both. A nationwide EBM project was launched in 2002 under the su-
pervision of the MOHW and patient involvement has been a goal of the Taiwan Patient
Safety programme since 2004.
The 1986 Medical Care Act requires written informed consent from patients before opera-
tions and the Physicians Act requires doctors to provide patients with clear,
comprehensible information about treatment plans, interventions, medications, prognosis
and possible adverse effects.
A Patient Self-Determination Act introduced in 2015 guaranteed participation and auton-
omy, but how this should be done and documented is still being worked out (23).
SDM was first mentioned at an EBM conference about three years ago, after which the
Ministry decided to launch a programme to promote SDM across Taiwan under the lead-
ership of the Joint Commission of Taiwan (JCT). The JCT receives funds from the
MOHW and is responsible for the national hospital accreditation programme. JCT staff
studied what was going on in other countries in relation to SDM implementation, before
developing a comprehensive plan for Taiwan.
National implementation of SDM was launched by MOHW in 2015 following a pilot study
in 10 hospitals and a series of specialist consultations and consensus meetings involving
patient groups, professional organizations, the Joint Commission of Taiwan (JCT), and
Taiwan Medical Association. The final implementation plan involved multiple coordinated
approaches.
Professional
Medical and nursing associations and some medical specialty societies were actively in-
volved in developing PDAs. They are generally supportive of the SDM implementation
programme.
Patient
Patient-centred care has been a policy priority since 2002 and an annual patient safety
week serves to focus attention on this topic. More than 200 patient representatives have
been trained and most hospitals involve patient volunteers. Despite this, finding patient
representatives to help promote SDM has been somewhat challenging. The Taiwan As-
sociation for Family Caregivers has a representative on the steering committee. This
person, a media specialist, has played an important role in helping to design campaign
materials.
Infrastructure
Training
Medical students and postgraduate medical trainees receive some training in communi-
cation skills, but this tends to be rather basic and does not include SDM. One of the
drivers for promoting SDM is the high incidence of disputes between patients and doc-
tors, especially in high risk specialties such as surgery and emergency care. It is hoped
that exposure to SDM will help to improve doctor-patient communications.
Page 48 | Appendix: country summaries
The SDM platform includes educational programmes and guidance, as well as the ac-
credited PDAs. It also includes special QR codes so physicians can easily prescribe
PDAs for their patients.
Hospitals are encouraged to promote SDM to their staff through continuing education
courses and clinic meetings. Feedback of results is also stressed. The JCT organises re-
gional and national conferences, including competitions and rewards for the best PDAs
and the best implementation methods.
Tools
MOHW and JCT worked with the hospitals to develop PDAs. The development process
included identifying patients’ questions, specifying the target population, clarifying the
treatment options, and comparing the benefits and harms of each option in line with pa-
tients’ preferences. The prototype PDAs, which included brochures and videos, were
tested in a pilot study with 30 patients to check for comprehensibility and usability.
In 2016 medical associations were asked to suggest priority topics for the development of
PDAs and 22 themes were suggested. Following an invitation to participate, 174 PDAs
were developed by hospital staff covering most of the 22 themes plus several others. An
expert committee was established to review these against IPDAS criteria, leading to the
approval of 57 PDAs for wider dissemination. These were uploaded onto the SDM Plat-
form for use by medical care providers across the country. Those that were not approved
were mainly traditional health education materials that did not explicitly recognise and
support the patient’s role in making decisions about their own care.
The PDAs are designed for use in clinical consultations and are currently only accessible
to medical staff, not the wider public, though this may change next year. Hospitals are
free to design their own systems for distributing PDAs. Some have developed electronic
prompts to encourage their use, while others rely on paper-based methods to integrate
the PDAs into clinical workflows and document their use.
There is no formal certification programme for PDAs at present, but it is hoped that one
will be established in the near future.
Campaigns
A Shared Decision Making Campaign was launched to encourage medical and
healthcare organisations to practice SDM and to promote the use and development of
PDAs. Videos were produced to promote SDM to healthcare professionals and patients.
Available in two dialects (Taiwanese and Hakka) in addition to Mandarin Chinese, the
public version encourages patients to consider what matters most to them and to com-
municate their expectations to doctors. The professional version provides information
about SDM, including the differences between SDM, informed consent and health educa-
tion, PDAs, and how the process can be implemented.
To encourage participation of hospitals, patients and their families, the JCT worked hard
to help hospital integrate SDM into their daily practice, using a variety of campaign mate-
rials including videos, posters, online resources, social media, health education activities
and good practice awards.
Practice
Demonstration
Participants in the national SDM programme have included 23 academic medical centres,
63 metropolitan hospitals, and 79 local community hospitals. Together these 165 institu-
tions have trained more than 17,300 health professionals, and reached more than
100,000 people through their campaign materials, health education activities and social
media.
Feedback on the SDM programme from frontline clinical staff has been largely positive,
but several challenges remain: busy work schedules can get in the way, especially in
emergency services and outpatient clinics, resources are limited and secure funding not
Appendix: country summaries | Page 49
yet established, proof of concept including PDAs and skills has yet to be proven in Tai-
wan, uncertainty about the legal status of SDM makes some physicians sceptical, and
cultural expectations of families’ role in decision making can cause conflicts.
Measurement
Regular public surveys are conducted which in recent years have shown an improving
trend in people’s willingness to cooperate with health professionals (23).
Coordination
The SDM programme is jointly coordinated by the MOHW and the JCT. JCT provides
consultancy services to hospitals to help them implement SDM. Currently 165 hospitals,
about a third of the total in Taiwan, are involved in implementing SDM. They are first in-
vited to identify priority topics, followed by a search for suitable PDAs. They then develop
strategies for integrating these into their workflows.
Funding for central coordination, training, development and design of the campaign
comes from the government, while individual hospitals are responsible for covering their
own costs. The JCT’s hospital accreditation programme includes SDM implementation as
one of the quality criteria, providing an added incentive for hospitals to take part.
A survey of 484 medical institutions to identify barriers and facilitators to implementing
SDM identified lack of appropriate PDAs, lack of relevant training courses, and lack of fa-
miliarity with SDM as the main barriers, while recognition of the positive impact of good
doctor-patient communication, agreement on the need to improve care outcomes, and
the presence of medical staff with adequate knowledge of SDM were seen as the most
important facilitators. These findings will be used to design future implementation strate-
gies.
A survey of frontline clinical staff (doctors and nurses) and patients involved in the na-
tional SDM programme elicited a very positive response with 86% agreeing that PDAs
were useful for patients facing major medical decisions and helped to improve communi-
cations.
Overview
Taiwan has made astonishing progress towards wide implementation of SDM in a re-
markably short space of time. This appears to be due to the strong lead from the MOHW
and the JCT.
There is recognition that the fast roll-out has caused a few problems, including resistance
from some clinicians, patients and families, so the programme leaders plan to spend the
next year consolidating the learning, strengthening the campaign, and ensuring the pro-
gramme is sustainable in the longer term. This will involve persuading the national health
insurance system to provide financial support and incentives to practice SDM, as well as
developing a system for maintaining and updating PDAs. Collaboration with research in-
stitutes will also be needed to evaluate the impact of the programme.
Judged on progress to date in Taiwan, the scope and scale of this centrally developed,
systematically planned, comprehensive national programme is most impressive.
Page 50 | Appendix: country summaries
11.8 United Kingdom
Health system
Most UK citizens depend on the National Health Service (NHS) for almost all their
healthcare needs. Funded out of taxation, the NHS covers primary care, hospital care (in-
patients and outpatients), community care (including home nursing and other out-of-
hospital services), and mental health care. These services are free at the point of use.
Social care for those needing non-medical help due to disabilities or frailty is provided on
a means-tested rather than universal basis and is organised and funded locally.
The NHS was established in 1948 and run centrally for the whole of the UK by the De-
partment of Health in London until 1999, when responsibility for managing healthcare was
devolved to the four nations of England, Scotland, Wales and Northern Ireland (24).
Leadership
Policy
SDM has been a policy priority for the NHS for several years, building on a long tradition
of research into SDM dating back to the early 1990s.
The NHS Constitution for England states that people have the right to be involved in plan-
ning and making decisions about their health and care and to be given information and
support to enable this. Scotland’s Charter of Patients’ Rights and Responsibilities makes
a very similar commitment, and similar rights are guaranteed for patients in Wales. North-
ern Ireland is the only part of the UK that has seen no government commitment to SDM
as yet.
The National Institute for Health and Care Excellence (NICE), which produces evidence-
based guidance for the NHS, has published several quality standards underlining the
need for SDM, is developing PDAs to go alongside some of its clinical guidelines, and is
working on the production of a guideline on the uses and effects of SDM (110).
NHS England, the body that sets the priorities and direction of the NHS in England, is
committed to embedding SDM in its strategic and practical developments. Its Right Care
programme includes three goals for its work on SDM to support SDM through the de-
velopment of tools and decision coaching, to embed SDM in NHS systems and
processes, and to create a receptive culture for SDM.
In Scotland the Chief Medical Officer has instituted a programme of work entitled Realis-
tic Medicine, with a strong focus on SDM. The Scottish government’s Health Literacy
Action Plan aims to make it easier for patients to work in collaboration with clinicians, in-
cluding SDM, through communication skills training and provision of clear information and
other literacy tools (137).
In 2015 a landmark ruling by the UK Supreme Court set a new legal standard when the
judges decided that patients with full mental capacity must be properly advised about
their treatment options and the risks associated with each option so that they can make
informed decisions when giving or withholding consent to treatment. In other words, the
principles of shared decision making must become the norm.
Professional
The General Medical Council (GMC), the official regulator for doctors across the UK, calls
on them to work in partnership with patients, providing the information they need to make
decisions about their care. Other regulators, including the Nursing and Midwifery Council
have espoused similar principles.
The Academy of Medical Royal Colleges, the coordinating body for the UK and Ireland’s
24 medical Royal Colleges and Faculties, is promoting SDM through its Choosing Wisely
campaign. A key goal of the campaign is to encourage better conversations between pa-
tients and doctors. The Choosing Wisely website includes links to patient decision aids
where these are available to complement their recommendations.
Appendix: country summaries | Page 51
Several of the medical royal colleges and their specialty societies have been encouraging
their members to practice SDM, including the Royal College of Physicians, the Royal Col-
lege of General Practitioners, the Royal College of Surgeons, the Royal College of
Anaesthetists, and the Royal College of Psychiatrists.
The Royal College of General Practitioners, NHS England, and the Coalition for Collabo-
rative Care are working together to promote care and support care planning (SDM by
another name) for people with long-term (chronic) conditions. This involves eliciting the
patient’s goals and concerns and together developing an action plan to achieve these.
The action plans often go beyond traditional medical services to include identifying sup-
port from local community groups and services.
Patient
National Voices, a coalition of 140 charities campaigning for people to be in control of
their health and care, has a strong record of campaigning for SDM. Their Narrative for
Person-Centred Coordinated Care has been very influential at national and local levels in
England. They have also produced snapshot reports that draw attention to slow progress
in rolling out SDM (45).
Healthwatch is the national champion for people who use health and social care services
and several of its local groups have joined campaigns to promote SDM.
Infrastructure
Training
The GMC is responsible for regulating all stages of doctors' training and professional de-
velopment in the UK. Medical schools and postgraduate training programmes are
expected to ensure that the GMC’s principles and standards set out in Good Medical
Practice are taught and assessed. These include communication skills and the require-
ment to work in partnership with patients, sharing the information they need to make
decisions about their care. The GMC’s Generic Professional Capabilities Framework sets
out the behaviours, skills and knowledge that doctors in training should demonstrate, in-
cluding SDM.
In 2017, Health Education England (HEE), which coordinates training for the broader
healthcare workforce, commissioned Skills for Health to produce a framework to support
person-centred approaches for the health and care workforce, including SDM. HEE also
commissioned an e-learning course on SDM.
The Health Foundation’s MAGIC programme developed various SDM training resources
from 2010-2013 that are still available on a mothballed website.
The Advancing Quality Alliance (AQuA), based in north west England, offers a range of
training and consultancy programmes focused on person-centred care and SDM. They
worked with NHS Right Care to train health professionals, engage patients and promote
the inclusion of SDM in professional education.
Tools
A number of organisations have developed PDAs intended for use in the NHS, including
NHS England, which has funded and approved 52 PDAs, NICE, the Option Grid Collabo-
rative and the Health Foundation’s MAGIC (making good decisions in collaboration)
programme. These are all freely available on various websites, and the NICE website
now carries links to 77 PDAs.
The NHS in England has a national portal for patient information called NHS Choices, but
it no longer carries links to decision aids.
NHS England’s Information Standard operates a certification scheme for producers of pa-
tient information materials, while NICE accredits developers of clinical guidance. A
combination of these approaches has been proposed as the basis of a certification
scheme for PDAs, but as yet no funds have been made available to cover the cost of es-
tablishing it.
Page 52 | Appendix: country summaries
Campaigns
The phrase ‘Nothing about me, without me, first used in a healthcare context in a Salz-
burg Seminar in 1998 (138), was adopted as a campaign slogan during the NHS reforms
of 2012. It was later modified to ‘No decision about me, without me’ and widely used by
NHS England and the King’s Fund, among others, to promote the idea of SDM.
Several local sites involved in the MAGIC programme adopted the Ask 3 Questions cam-
paign, originally developed and trialled in Australia. The original three questions were:
What are my options? What are the possible benefits and risks of these options? How
likely are the benefits and risks of each option to occur? In some sites the final question
was modified after consultation with local patients, to How can we make a decision to-
gether that is right for me? A range of campaign materials was produced to promote the
three questions, including flyers, handouts, pens, posters and other materials.
AQuA also used the Ask 3 Questions approach in its work with NHS Right Care, and they
produced a short video for use in clinic waiting rooms.
Practice
Demonstration
MAGIC was a national SDM implementation programme funded by the Health Founda-
tion and led by academic teams at Cardiff and Newcastle universities (58). Clinical teams
from a variety of services (primary care, breast cancer care, obstetrics, urology and ear,
nose and throat) took part, including 270 doctors, nurses and NHS managers. Activities
included skills development and engagement, guidance on developing, adapting and im-
plementing PDAs, facilitation and peer support for clinical teams, patient forums and the
Ask 3 Questions campaign. The programme helped to consolidate learning about the key
implementation challenges and how these can be overcome (15).
NHS England, which has been encouraging SDM implementation through its Right Care
programme, has recently announced the establishment of a new demonstration project in
one region designed to embed SDM in orthopaedic practice.
Year of Care Partnerships is examining how to provide better support for people with
long-term conditions by engaging them in developing personalised care and support
plans. Demonstration sites are using a model known as the House of Care to help pri-
mary care teams adapt their services to the needs of these patients (139).
The House of Care model is also being promoted by the Coalition for Collaborative Care
which aims to make person-centred collaborative care the norm, especially for people
with long-term conditions.
Measurement
There is some experience of using SDM measures in routine NHS care. The AQuA pro-
gramme used a balanced score card that included a longitudinal survey to assess
readiness and engagement in implementation, two patient-reported measures - SURE
and CollaboRATE, analysis of routine data to assess impact on system processes and
clinical outcomes, and various narrative measures of patients’ experience. While there
was evidence of improvements in the different sites, some of the measures produced re-
sults that were hard to interpret (140).
The MAGIC programme also used a variety of measures, including a specially developed
generic questionnaire about patients’ experience of SDM, and Decision Quality Measures
based on the Decision Quality Instruments developed in the US. They also developed an
SDM code for use in GP computer systems to allow primary care teams to record that an
SDM discussion had taken place (58).
A number of clinical teams around the UK are using the Patient Activation Measure
(PAM) to monitor people’s knowledge, skills and confidence to manage their own health.
This is being used both for assessing support needs and to measure outcomes of various
interventions, including SDM.
Appendix: country summaries | Page 53
The Care Quality Commission has run a large national patient experience survey pro-
gramme since 2002. These surveys show that at least 40% of hospital patients remain
less than fully satisfied with opportunities for involvement in decisions about their care.
Coordination
In 2015 NICE convened a meeting for organisations working to promote SDM. Since then
the group has expanded, meeting on an annual basis to share experiences and coordi-
nate activities (110). It includes representatives from NHS England, medical
organisations, patient groups, academics and people working in quality improvement. In
2016 the various organisations involved in the NICE Shared Decision Making Collabora-
tive committed to various actions and in 2017 they reconvened to review progress. NICE
has recently announced its intention to develop a guideline on SDM.
Overview
The UK has had a long history of researching and implementing SDM, but these efforts
were largely uncoordinated initially and progress was slow. There are signs now that the
momentum is increasing with better coordination and growing awareness among clini-
cians. Effective medical leadership was slow to develop but does now seem to be
emerging. However, there is no dedicated funding stream for SDM initiatives and little in-
terest from health ministers in England at present, although policymakers in Scotland
appear to be more engaged.
Page 54 | Appendix: country summaries
11.9 United States of America
Health system
The traditional fee-for-service health system in the US has proved very costly and ineffi-
cient so various reforms have been attempted over the years. Following the passing of
the Patient Protection and Affordable Care Act (ACA) in 2010 efforts are being made to
shift to a value-based system known as the triple aim better health, better care and
lower costs (141). The ACA led to the development of Accountable Care Organisations
(ACOs) and payment reforms, among other things. SDM is seen as a strategy for ad-
vancing the triple aim (25).
Leadership
Policy
1982 saw the first mention of SDM in a US policy document when the President’s Com-
mission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral
Research published its report on making health decisions (3). This included the following
statement: ‘Patients who have the capacity to make decisions about their care must be
permitted to do so voluntarily and must have all relevant information regarding their con-
dition and alternative treatments, including possible benefits, risks, costs, other
consequences, and significant uncertainties surrounding any of this information.
Awareness of widespread practice variations documented in the Dartmouth Atlas led to
the identification of preference-sensitive procedures where SDM was felt to be the logical
response (142).
Crossing the Quality Chasm, a major policy report from the Institute of Medicine called for
shared decision making in 2001 (143).
The ACA included several measures to encourage SDM Implementation (141).
The Patient-Centred Outcomes Research Institute (PCORI) was established in 2010 to
ensure that patients and the public have information they can use to make decisions that
reflect their desired health outcomes. PCORI has made significant funds available for
SDM research to date US$6,500,000 (€5.5 million) for implementation research and
US$8,400,000 (€7.1 million) to develop measures.
In 2017 the Centers for Medicare and Medicaid Services (CMS) introduced plans to test
two new types of payment incentive the SDM model (where decision support is pro-
vided within clinical encounters) and the Direct Decision Support (DDS) model (where it is
provided outside the clinical care setting), but the SDM model was later shelved due to
lack of interest from ACOs. The DDS model is still in place however and once fully rolled
out it should provide decision support to a significant majority of the Medicare fee-for-ser-
vice population with one or more of the following conditions: stable ischaemic heart
disease, hip osteoarthritis, knee osteoarthritis, herniated disk or spinal stenosis, clinically
localized prostate cancer, and benign prostatic hyperplasia. There are also plans to incor-
porate measures of patient preferences and shared decision making into a new merit-
based incentive program (25).
Several US states have established specific initiatives to promote SDM (Maine, Massa-
chusetts, Minnesota, Oregon, Vermont, Wisconsin), and most notably Washington State,
which introduced legislation in 2007 offering a higher level of protection in informed con-
sent liability actions when SDM is practised (144). Their definition of SDM includes the
use of PDAs, so in 2016 they established a certification process to quality assure and
approve these tools.
Appendix: country summaries | Page 55
The National Quality Forum has developed national standards for accrediting decision aid
standards, largely based on the IPDAS criteria, and measurement (145).
SDM is seen as a key plank of the Primary Care Medical Home model, including the pro-
vision of PDAs.
The Agency for Healthcare Research and Quality (AHRQ) has developed PDAs and a
structured training programme in SDM skills.
Professional
The American Medical Association has endorsed shared decision making between clini-
cians and patients, as have a number of other medical organizations including the
American Academy of Family Physicians, the American Academy of Orthopaedic Sur-
geons, the American Association of Colleges of Nursing, the American Association of
Colleges of Osteopathic Medicine, the American Association of Colleges of Pharmacy,
the American Board of Internal Medicine, the American Cancer Society, the American
College of Cardiology, the American College of Physicians, the American Dental Educa-
tion Association, the American Society of Clinical Oncology, the American Urological
Association, the Association of American Medical Colleges, the Association of Schools of
Public Health, the High Value Health Collaborative, the Josiah Macy Jr. Foundation, and
the US Preventive Services Task Force (144).
A survey of a representative sample of US doctors in 2012 found that two-thirds endorsed
the notion that ‘promoting better conversations with patients as a means of lowering
healthcare costs’. There was strong agreement that PDAs that include information about
costs would be helpful, but most disagreed that promoting SDM should be legislated to
contain costs (41).
Patient
The National Partnership for Women and Families has been a strong advocate for SDM,
likewise the Society for Participatory Medicine, but patient organisations have not been in
the forefront of the push for SDM, coming relatively late to the table.
Infrastructure
Training
Laval University’s Inventory of Shared Decision Making Training Programs for Health
Professionals lists several courses developed in the US, but there is no formal require-
ment to include it in pre-registration or post-registration training for doctors.
AHRQ’s SHARE training programme is a train-the-trainers course that aims to help par-
ticipants understand and implement SDM. It covers five steps: 1) seek patient’s
participation, 2) help your patient explore and compare treatment options, 3) assess your
patient’s values and preferences, 4) reach a decision with your patient, 5) evaluate your
patient’s decision.
The Society for Medical Decision Making offers a short introductory course in shared de-
cision making and PDAs.
Healthwise offers a proprietary online course in SDM for clinicians.
Dartmouth Medical School has introduced a course in SDM skills for trainees in their third
year Family Medicine Clerkship programme (146).
Tools
Many US-based organisations have developed PDAs, including researchers, companies
(both for-profit and not-for-profit), health care providers, professional societies, insurers,
and government agencies. Examples include AHRQ, EBSCO Health, Health Dialog,
Healthwise, and Mayo Clinic. Some of these aids are proprietary and not freely available.
AHRQ has developed a number of PDAs on specific clinical topics as part of their Patient
Centered Outcomes Research initiative. They have also produced tools to encourage pa-
tients to ask questions about their treatment.
Page 56 | Appendix: country summaries
EBSCO Health has recently taken over responsibility for developing and disseminating
Option Grids, brief tools presented in a FAQ format and intended for use in clinical con-
sultations.
Health Dialog, a population health management company, now part of the Rite Aid group,
offers PDAs with video and evidence-based content, 39 of which were originally produced
in collaboration with the Informed Medical Decisions Foundation until it merged with
Healthwise.
Healthwise, a not-for-profit health information company founded in 1975, has produced
the greatest number of PDAs, with 172 listed in the ORHI A-Z inventory. Most of their
aids are designed for integration into electronic medical record systems.
The Mayo Clinic has developed a number of in-consultation tools to aid clinical discus-
sions that are freely available for non-commercial use. Some of their PDAs are available
in Spanish and Chinese languages.
Campaigns
In October 2017 the National Quality Forum, in partnership with 20 professional and pa-
tient organisations, issued a national call to action for all individuals and organizations
that provide, receive, pay for, and make policies for healthcare to embrace and integrate
shared decision making into clinical practice as a standard of person-centred care.
Practice
Demonstration
The Informed Medical Decisions Foundation (previously known as the Foundation for In-
formed Medical Decision Making) was founded in 1989 and worked for over two decades
to advance evidence-based SDM through research, policy, clinical models and patient
decision support. Their medical editors and clinical advisors came from prestigious aca-
demic medical centres and research groups. They established a network of about 30
demonstration sites around the USA, with a learning collaborative dedicated to embed-
ding SDM in routine clinical care in a variety of settings (11, 62). The Foundation merged
with Healthwise in 2014. The research work now continues as the Informed Medical Deci-
sions Program, based at Massachusetts General Hospital, with core funding from
Healthwise.
The Center for Shared Decision Making at Dartmouth Hitchcock Medical Center in New
Hampshire opened in 1999, the first such centre in the US. It provides decision support
counselling and PDAs with a patient support corps of volunteers and staff to answer
questions and support patients.
The Massachusetts General Hospital, a large academic medical centre with a network of
primary care practices and a Harvard teaching hospital in Boston, has been encouraging
its physicians to practise SDM since 2005 with support from its Health Decision Sciences
Center. During the subsequent 10 years they trained more than 900 health professionals
and received more than 28,000 orders for one of about 40 PDAs produced by Health Dia-
log (63). They have also developed a set of detailed measurement tools, the Decision
Quality Instruments.
Group Health, a large health care delivery system in Washington State (now part of Kai-
ser Permanente), introduced SDM in six specialties: orthopaedics, cardiology, urology,
women’s health, breast cancer, and back care (40, 147). The project established sys-
temwide and clinic-specific processes that facilitated the distribution of approximately
25,000 PDAs by July 2012. Several factors were identified as important for success, in-
cluding strong support from senior leaders, establishing a system for pre-visit ordering,
engaging providers and staff in development of the implementation process, and finding
Appendix: country summaries | Page 57
ways to address concerns about conditions that were perceived as life-threatening and/or
time sensitive.
The Mayo Clinic has established a shared decision making resource centre, including
PDAs, training programmes, implementation toolkits, and research.
Measurement
The DECISIONS study, a nationally representative population survey, carried out in
2006/7 by the Informed Medical Decisions Foundation and the University of Michigan,
found major deficits and variations in patients experience of SDM across the US (148,
149). Providers were unlikely to recommend a ‘no treatment’ option and few patients re-
ported that providers asked them about their preferences, although this varied widely
according to the patient’s condition and treatment options.
A more recent study, based on analysis of the 2014 Medical Expenditure Panel Survey,
found significant improvements in the proportion of patients who reported receiving four
components of SDM joint involvement in decisions, sharing of information, building of
consensus, and agreement on treatment (109).
As part of its work on developing a certification scheme for PDAs, the National Quality
Forum is evaluating SDM measurement tools for endorsement (145).
The national Consumer Assessment of Health Plans Surveys (CAHPS) patient surveys
include a number of questions of relevance to SDM.
Coordination
There is no central organisation that coordinates work on SDM initiatives and tools, but
some commercial organisations with a longstanding interest in this area, e.g. Healthwise,
have developed systems for hosting and updating PDAs. The current drive for certifica-
tion of PDAs appears to be a response to the financial incentives for SDM introduced by
CMS. It is possible that this may encourage initiatives to coordinate implementation ef-
forts.
It remains to be seen whether the National Quality Forum’s initiative will develop into an
effective coordination mechanism. Their SDM Action Team plans to release a National
Quality Partners PlaybookTM in March 2018 highlighting common barriers to implementing
SDM in clinical practice.
Overview
More work has been done on SDM in the US than in any other country, perhaps not sur-
prisingly given that it was there that the concept and methods were first developed. There
is encouraging evidence of progress, but the complexity and fragmentation of the health
system, coupled with commercial capture of many improvement mechanisms, still inhibit
its incorporation into mainstream care.
Page 58 | References
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Author | Page 65
Author
Angela Coulter, PhD, Hon FRCGP
Angela Coulter is a UK-based health policy analyst and researcher, with
special interests in patient and public involvement. A social scientist by
training, she has higher degrees in health services research from the Uni-
versity of London and the University of Oxford. Now freelance and still
involved in research, her previous roles include Chief Executive of Picker
Institute Europe, Director of Policy and Development at the King’s Fund,
Director of the Health Services Research Unit at the University of Oxford
and Director of Global Initiatives at the Informed Medical Decisions Foun-
dation. She is an Honorary Professor at the University of Southern
Denmark, an Honorary Fellow of the Royal College of General Practition-
ers and a Non-Executive Director of the National Institute for Health and
Care Excellence (NICE).
Angela Coulter has published more than 300 research papers and re-
ports and several books including The Autonomous Patient, The
European Patient of the Future (winner of the 2004 Baxter Award), The
Global Challenge of Healthcare Rationing, Hospital Referrals, Engaging
Patients in Healthcare and Understanding and Using Health Experiences.
She was the founding editor of Health Expectations, an international
peer-reviewed journal on patient and public involvement in health care
and health policy. She has won awards for her work from the Donabedian
Foundation of Barcelona in 2012 and the International Shared Decision
Making Conference in 2013.
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marion.grotewestrick@bertelsmann-stiftung.de
Project “Patients with Impact”: https://www.bertelsmann-
stiftung.de/en/our-projects/patients-with-impact/
... Another contrast with the present study is that the German study found some participants, especially nurses, lacked both understanding and experience of the concept of SDM [11]. This may reflect the fact that we included the definition of SDM in the Danish version, but it might also reflect cultural differences in implementing SDM in Germany and Denmark respectively [31]. ...
... On the contrary, for item 7, we found high item difficulty, indicating that the Danish HCPs recognize SDM as a lasting trend. This may reflect the numerous and varied initiatives in the Danish national implementation strategy [31]. Among these are government funding, strong patient leadership, the establishment of implementation and research centres, and, not least, an upcoming implementation of SDM teaching in the curriculum in medical education and bachelor's degrees in nursing. ...
... Among these are government funding, strong patient leadership, the establishment of implementation and research centres, and, not least, an upcoming implementation of SDM teaching in the curriculum in medical education and bachelor's degrees in nursing. Although SDM is making good progress in Denmark, there are also challenges to real-world implementation from the lack of legislation and the absence of a concise definition of the concept of SDM [31]. ...
Article
Full-text available
Background Shared decision making in healthcare is a fundamental right for patients. Healthcare professionals' perception of their own abilities to enable shared decision making is crucial for implementing shared decision making within service. IcanSDM (I can shared decision making) is a brief measure to investigate healthcare professionals' perception of shared decision making approaches to their practices. It was developed in Canada with French and English versions, and recently translated into German. This study aims to adapt the IcanSDM measure for Danish-speaking healthcare professionals, and evaluate its psychometric properties. Methods Cultural adaptation and translation based on Beaton et al.'s approach was applied. A forward translation by ten people and a backward translation by two people were performed. To assess comprehensibility, cognitive interviews were conducted with 24 healthcare professionals. Eighty healthcare professionals who were trained in shared decision making for either one hour (n = 65) or one day (n = 15) participated in the psychometric evaluation. The evaluation concerned acceptance, item characteristics, skewness, item difficulties, corrected item-total correlations, inter-item correlations, factorial structure, internal consistency, and responsiveness. Results The forward and backward translation revealed few discrepancies, and participants understood the items well. The psychometric evaluation showed a high completion rate and acceptable item difficulties and discrimination values. Both the factor analysis and the internal consistency showed a 2-factor structure: 1) healthcare professionals' capacity to implement shared decision making; and 2) healthcare professionals' capacity to practise shared decision making. The IcanSDM_Danish obtained a Cronbach’s alpha coefficient of 0.74. The evaluation of responsiveness showed improvement, but was not statistically significant. Conclusion The IcanSDM_Danish has good cross-cultural validity and internal consistency, and a 2-factor structure. The IcanSDM_Danish is capable of providing reliable and valid measurement when evaluating constructed knowledge about shared decision making, and may be able to support the implementation of shared decision making training and evaluation of its impact.
... Cultures may vary within different hospitals and departments, hence SDM has proved difficult to implement and sustain in routine clinical practice. Notwithstanding good intentions and policy statements describing better implementation of SDM into clinical routine practice, this has not occurred [1,[3][4][5][6]. We know that cultural and practical barriers partly explain this difficulty, for example shortage of accessible knowledge, skills and experience about SDM methods as well as lack of adaption to clinical systems and workflows, missed opportunities to engage patients and scarce strategies for implementation [7][8][9][10]. ...
... We know that cultural and practical barriers partly explain this difficulty, for example shortage of accessible knowledge, skills and experience about SDM methods as well as lack of adaption to clinical systems and workflows, missed opportunities to engage patients and scarce strategies for implementation [7][8][9][10]. However, in the context of SDM implementation, there exists a gap in accessing the progress of the formative components of SDM implementation, despite available literature reporting these formative components as important for successful SDM implementation [3,8,[11][12][13][14][15]. ...
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Shared decision-making (SDM) involves patients in choosing their treatment or care options. SDM enhances patient engagement and treatment satisfaction. SDM has proved difficult to implement and sustain in routine clinical practice, hence a supportive tool is needed. This quality improvement study focuses on the development of a generic tool, labeled SDM:KOMPASS, which is intended to support hospital settings by facilitating the visualization of their formative progress and the setting of goals for the SDM implementation into routine clinical practice. The main objective of the present paper is to describe the development of this generic tool. A six-step development process was performed to develop a tool and investigate the tool’s overall perceived usability. Qualitative methods, such as observations, individual and focus group interviews, provided insights. A 10-item quantitative survey gauged informants’ immediate attitudes towards the tool. Purposefully sampled informants (N = 20), including healthcare professionals and patients, contributed diverse perspectives regarding; 1) The tool’s readability and clarity, 2) the construct’s domains and content, and 3) the tool’s perceived usability. In alignment with real-world challenges, SDM:KOMPASS emerges as a potentially valuable resource for healthcare organizations embedding SDM. The six-step development process revealed how the tool SDM:KOMPASS has potential to enhance SDM implementation’s manageability, goal-setting, and focus. Professionals engaged in strategic implementation within somatic and mental hospital departments find the tool potentially beneficial and feasible. The tool shows promise and usability but requires careful attention due to its comprehensiveness. The next step is to alpha test the tool in clinical practice.
... SDM takes place when clinicians and patients work together to best match patient preferences and perspectives with the available treatment options and reach a shared healthcare decision 2 . SDM is on the political healthcare agenda and represents a cornerstone in modern, patient-centered healthcare [3][4][5][6][7] . ...
... A deeper understanding of the diverging attitudes towards patient engagement in decision making is needed to refine the continued implementation of SDM. An implementation that is imperative in modern, patientcentered healthcare according to the political healthcare agenda [3][4][5][6][7] , and most patients wish for engagement in healthcare decision making [16][17][18] . In order to avoid spending sparse healthcare resources on unproductive attempts of SDM implementation it is fundamental to align the implementation processes with the attitudes and lived experiences of the clinicians who are encouraged to change their way of communicating with patients. ...
... In the SDM process, patient decision aids (PDAs) are intervention tools designed to assist patients in participating in making specific choices regarding treatment and medical care possibilities (Hsieh, 2022). Thus, when SDM is supported by PDAs, it may increase patients' ability to participate, thereby facilitating doctor-patient communication and decisions about appropriate care (Coulter, 2018). In 2016, the Joint Commission of Taiwan (JCT) devised a national implementation plan for SDM under the aegis of the Taiwan Ministry of Health and Welfare (MOHW) that incorporated multiple approaches, such as developing PDAs, executing the Medical Decision Aids campaign, establishing an SDM platform, and integrating SDM in medical care practice. ...
... In 2016, the JCT invited medical care teams from hospitals to develop 174 PDA tools, eventually approving 57 of them. It then uploaded these PDAs and 22 priority themes to an SDM platform for download and utilization by medical personnel across the country (Coulter, 2018). Furthermore, the MOHW has established an accreditation scheme called Healthy Hospitals, a program that combines elements of health literacy, SDM, and patient engagement as well as a patient-centered approach. ...