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Journal Article•DOI•

Shared decision making: really putting patients at the centre of healthcare

Anne M. Stiggelbout1, T. van der Weijden2, M P T De Wit, Dominick L. Frosch3, F Legare4, Victor M. Montori, Lyndal Trevena5, Glyn Elwyn6 •
Leiden University1, Maastricht University2, Palo Alto Medical Foundation3, Laval University4, University of Sydney5, Cardiff University6
27 Jan 2012-BMJ (BMJ Publishing Group)-Vol. 344, Iss: 7842, pp 87-91
TL;DR: Although many clinicians feel they already use shared decision making, research shows a perception-reality gap and A M Stiggelbout and colleagues discuss why it is important and highlight some best practices.
Abstract: Although many clinicians feel they already use shared decision making, research shows a perception-reality gap. A M Stiggelbout and colleagues discuss why it is important and highlight some best practices

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Introduction

  • Since there are few studies on procrastination and relevant factors in Turkey, well-rounded studies on the subject are needed.
  • For the determination of the predictive value of independent variables such as general procrastination, cognitive distortions, anxiety, time management and motivation in the second phase of the study, multiple regression analysis was carried out.
  • Rest of the variables included in the study was not significantly related with academic procrastination.

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Shared decision making: really putting patients at the
centre of healthcare
A M Stiggelbout professor of medical decision making
1
, T Van der Weijden professor of
implementation of evidence
2
, M P T De Wit patient representative
3
, D Frosch associate investigator
4
, F Légaré Canada research chair in implementation of shared decision making in primary care
5
,
V M Montori director of healthcare delivery research programme
6
, L Trevena associate professor
7
,
G Elwyn professor of primary care
8
1
Department of Medical Decision Making, Leiden University Medical Centre, PO Box 9600, 2300 RC Leiden, Netherlands;
2
Maastricht University
Department of General Practice, CAPHRI School of Public Health and Primary Care, Maastricht, Netherlands;
3
Dutch League of Arthritis Patients,
Zaltbommel, Netherlands;
4
Palo Alto Medical Foundation Research Institute, Palo Alto, CA, USA ;
5
Knowledge Transfer and Health Technology
Assessment Research Group, Hôpital St-François D’Assise, Québec QC, Canada ;
6
Center for the Science of Healthcare Delivery, Mayo Clinic,
Rochester, MN, USA;
7
Sydney School of Public Health, University of Sydney, NSW, Australia;
8
Institute of Primary Care and Public Health, School
of Medicine, Cardiff University Cardiff, UK
Abstract
Although many clinicians feel they already use shared decision making,
research shows a perception-reality gap. A M Stiggelbout and
colleagues discuss why it is important and highlight some best practices
Imagine yourself as a parent who is worried that your child is
missing school because of repeated attacks of tonsillitis. You
think tonsillectomy will solve the problem but learn from your
general practitioner that there is a risk of severe bleeding that
you were unaware of. You have second thoughts about surgery
as you learn more about the balance of potential benefits and
harms (box 1). This is an example of shared decision
making—clinicians and patients make decisions together using
the best available evidence. In partnership with their clinician,
patients are encouraged to consider available screening,
treatment, or management options and the likely benefits and
harms of each, to communicate their preferences, and help select
the course of action that best fits these.
1
Shared decision making should be the norm in most medical
practice for several reasons, the most important of which is an
ethical imperative under the widely accepted four principles.
3
Not only is it essential for respecting autonomy (enabling
individuals to make reasoned informed choices), but it is also
needed for beneficence (the balancing of benefits of treatment
against the risks and costs) and non-maleficence (avoiding
harm). To judge whether the benefits and risks of treatment are
balanced from a patient’s perspective and to avoid procedures
patients would rather not have if they were well informed (and
which thus may harm them), clinicians must determine their
patients’ preferences. Abundant evidence of a reduction in the
use of tests (such as prostate specific antigen) and elective
procedures
4
shows that patients tend to make more conservative
judgments than their doctors. Shared decision making may thus
also reduce unwarranted practice variation (both overuse and
underuse) and in some situations, by extrapolation, costs. The
fourth principle, justice (distributing benefits, risks, and costs
fairly) might also be enhanced if patients elect to have fewer
procedures. Equity may also increase if less educated people
are involved to the same extent as those who are more educated.
Finally, shared decision making may lead to better health
outcomes and lower litigation rates, although the evidence
remains limited.
5 6
Despite these benefits, shared decision making is not routine.
However, best practices are gradually emerging, and below we
provide examples—tactics and strategies that clinicians and
their organisations can use to support patients to become
involved in decision making.
Best practices for implementation
Several countries, including the United States and Canada, have
used multifaceted interventions targeted at systems or practices
to implement shared decision making.
7 8
Many involve the
dissemination of patient decision aids for situations where there
is no single “best” choice.
4
The decision aids may be pamphlets,
videos, or web based tools that describe the options available
and help patients to understand these options as well as the
possible benefits and harms (see http://decisionaid.ohri.ca/
AZinvent.php for an inventory of patient decision aids). These
tools help patients consider options from a personal viewpoint,
preparing them for participation in decision making.
4
Correspondence to: A M Stiggelbout a.m.stiggelbout@lumc.nl
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BMJ 2012;344:e256 doi: 10.1136/bmj.e256 (Published 27 January 2012) Page 1 of 6
Analysis
ANALYSIS
Box 1 Typical shared decision making consultation using a tonsillectomy option grid
2
Mother: I was hoping tonsillectomy would stop Anna missing so much school.
Doctor: It may do that of course—though exactly how much is really difficult to know. Anna is now 12 years old, and in many children
the attacks of tonsillitis get less frequent around this time. So not having surgery is an option too.
Mother: But it’s a simple operation isn’t it?
Doctor: Have a look at this information (gives her the option grid to read).
Mother: Oh … what’s this about the risk of bleeding?
Doctor: Let’s check the numbers. 1 in 100 risk of immediate bleeding and 3 in a 100 risk of serious bleeding in the two weeks after the
operation.
Mother: I did not know that at all. I’m not sure I want to take that chance, to be honest.
Doctor: How about you take this information home to share with your husband. I’m happy to refer your daughter at any time, but it’s
best you consider this information before you make that decision.
Mother: Thank you.
In Canada, the province of Saskatchewan promotes the use of
decision aids in surgical specialties. Outcome data, such as
decision quality are collected for monitoring purposes.
8
But
dissemination of decision aids alone is not enough. Although
decision aids are designed to empower patients, they have been
developed for independent use outside the clinical encounter
and shared decision making does not necessarily follow.
Shared decision making is more likely if the decision support
tools have been developed for use in face to face clinical
encounters. Examples of these tools are the Wiser Choices tools
developed at the Mayo Clinic in the US (http://shareddecisions.
mayoclinic.org), and option grids (www.optiongrid.co.uk/)
developed in Cardiff. Wiser Choices tools are structured
graphical displays of risks that help clinicians convey
information to patients, enabling decisions that are consistent
with both the best available evidence and the values and
preferences of the patient (figure⇓). Option grids are one page
summaries that provide answers to patients’ frequently asked
questions when considering treatment choices (such as whether
to have amniocentesis). Using these kinds of tools in clinical
encounters facilitates shared decisions without substantially
increasing consultation times.
9 10
Although helpful, patient decision aids and short decision
support tools are currently available for only a limited number
of conditions. A broader approach is therefore required to
implementing shared decision making. The Center for Shared
Decision Making at Dartmouth Hitchcock Medical Center in
the US provides service and training to patients and clinicians
(http://patients.dartmouth-hitchcock.org/shared_decision_
making.html). In the UK the MAGIC programme (Making Good
decisions in Collaboration), funded by the Health Foundation,
aims to embed shared decision making in daily practice in a
range of clinical settings, stimulating skills development and
behavioural change. Simple changes to clinical pathways create
opportunities for more shared decision making—for example,
an adapted pathway for children referred for an opinion
regarding tonsillectomy (table⇓).
Many patients do not expect to be involved in decision making
and so need to be made aware that their preferences, when well
informed, may determine the most appropriate choice of
treatment. Simple changes in doctor-patient communication can
lead to striking improvements in shared decision making. A
short instruction to patients to ask three simple questions has
been shown to lead to more shared decision making.
10
In the
MAGIC programme, posters displayed in waiting rooms urge
patients to ask these three questions (“What are my options?”
“What are the benefits and harms?” “And how likely are
these?”). Increasing patients’ self efficacy will increase their
intention to share in decision making.
11
The arrival of so called
e-patients (equipped, enabled, empowered, and engaged in
healthcare decisions) fits these ideas.
12
In many of the initiatives described above, patients participate
in developing indicators for quality of care, in the education of
health professionals, and in the development of patient centred
services. Similar demonstration projects by the Foundation for
Informed Medical Decision Making are under way in the
US—for example, at the Palo Alto Medical Foundation.
7
Simple strategies for individual clinicians
The first and most important step in shared decision making in
preference sensitive decisions
13
is creating awareness of
equipoise —that is, explaining to the patient that there is no best
choice, that a decision has to be made, and that doing nothing
or keeping the status quo is also an option.
14 15
After having laid
out the options, the next step is to discuss the benefits and harms
of each, as well as their respective probabilities. Exact
probabilities are not always needed, but in most preference
sensitive decisions
13
the patient will need numbers to be able to
weigh the pros and cons. A patient will have difficulty in
deciding between surgery and watchful waiting for an aortic
aneurysm if he does not know the approximate chances of a
rupture or of operative mortality and other complications. Here
the mentioned decision tools become valuable. If these are
unavailable, simply communicating what will happen to 100 or
1000 similar patients in case of either option (that is, giving
absolute not relative risks) will help the patient weigh the
benefits and risks.
Next, patients’ ideas, concerns, and expectations about the
options, their benefits, and their harms should be elicited, and
the patient should be supported in the process of deliberation
(box 2).
For shared decision making to occur, a form of partnership
should be built that goes beyond rapport and involves sharing
responsibility.
15
More responsibility can be a burden, however,
so professionals should encourage and support the process,
explaining that it preferably is a shared process, to prevent
patients from feeling abandoned and that they have to decide
on their own.
The patient’s preferred role should be explored,
14
but not until
the information has been provided. Research shows that patients
who initially may be reluctant to participate in the decision often
change their mind after the options have been laid out.
16
Thus,
after sharing information, clinicians should empathically invite
patients to engage to the maximum extent they desire in making
this decision at this time. Some patients are afraid of being
assertive, fearful that this will jeopardise a good doctor-patient
relationship and lead to lower quality care.
17
Therefore, clinicians
should invite patients to participate, assess what patients need
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BMJ 2012;344:e256 doi: 10.1136/bmj.e256 (Published 27 January 2012) Page 2 of 6
ANALYSIS
Box 2 Questions to support deliberation
• What do you expect from treatment for your condition?
• Do you have all the information you think you need to weigh up these two options?
• Thinking about this decision, what is the most important aspect for you to consider?
• What aspects of surgery are you most concerned about?
• How do the benefits of both options compare? And how do the harms compare?
• Are there important other people that you want to talk to in making this decision?
to make a decision, provide appropriate support, and help make
decisions when patients prefer to defer to them. It would be
inappropriate to force decision making responsibilities on people
who genuinely defer this role, for this may cause harm and
distress. Though shared decision making needs input from and
interaction with a clinician, it need not occur entirely in the
consultation or under time pressure.
18
Indeed, most patients
value the opportunity to involve others,
19
and so supporting and
allowing time for this process is also required.
What can the profession do?
Clinical practice guidelines could promote shared decision
making by highlighting decision points and suggesting what
information to communicate about reasonable options and how
to involve patients.
20
Postgraduate training and accreditation
can also support implementation of shared decision making.
Skills training can change the extent to which clinicians practice
shared decision making.
21
Because clinicians have to be able to
discuss evidence based information and elicit patient
preferences, linking courses on shared decision making with
those on evidence based medicine could also be beneficial. Risk
communication and eliciting patient preferences remain a
neglected part of evidence based medicine.
22
Integrating shared
decision making into the evidence based medicine framework
will cut both ways, helping clinicians to communicate evidence
and ask patients for their preference as well as promoting shared
decisions.
Debate
Despite the push to implement shared decision making, some
questions remain. We need more data on whether it requires
significant amounts of extra time. If so, will re-engineering
clinical pathways to provide decision support at the right times
solve this problem, and, if not, will better adherence, less
overtreatment, and improved quality of care from the patient’s
perspective be sufficient gain to justify more time spent in the
clinical encounter?
The use of guidelines may counteract the implementation of
shared decision making if patient preferences are at odds with
guideline recommendations and possibly with clinician
preferences. When using guidelines patient preferences are
generally not elicited or are over-ruled.
23
It is not clear whether
professionals are willing to change this situation.
Finally, it has been argued that shared decision making is
relevant only for well educated middle class patients and a
luxury for high income countries. There is evidence, however,
that if patients with lower literacy are provided with well
designed information and given appropriate support they
participate equally well and stand to benefit the most by
becoming more aware of the evidence.
24
Although most research
has occurred in high and middle income countries,
25
the concept
of shared decision making is entirely consistent with the
priorities of low income settings—that is, to improve health
literacy, improve patient provider communication, and empower
individuals to be more involved in their healthcare.
26
Healthcare
in low income countries is often constrained by limited human
and physical resources. Literacy levels among patients may be
low and cultural factors may require communication strategies
that are more inclusive of family and friends. New innovations
using mobile phone technologies have recently become more
common in low resource settings, although most have been
unidirectional—either collecting data or issuing reminders or
health promotional material.
27
There is real potential for these
to become more interactive and provide a platform for shared
decision making in low income countries.
Where to go from here?
Shared decision making is a complex intervention, and its
implementation in healthcare will need multifaceted strategies
coupled with culture change among professionals, their
organisations, and patients. This shift starts with increased
awareness at all levels of society, as expressed in the Salzburg
statement.
18
It is important to monitor which of the many
practices described above are the most successful in promoting
shared decision making and disrupt the clinical workflow no
more than necessary. The ultimate goal is that it is not seen as
a tedious added extra but as the core of good clinical practice,
with patients placed fully at the centre of all decisions.
Contributors and sources This paper originated in debates at the sixth
international shared decision making conference in Maastricht,
Netherlands, June 2011 (www.ISDM2011.org). AMS is president of the
Society for Medical Decision Making. TVDW was chair of ISDM2011,
MDW is patient representative of the Dutch League of Arthritis Patients,
DF is associate professor of medicine at UCLA, FL leads research into
implementing shared decision making in primary care, VMM designs
and conducts trials of patient decision aids in routine clinical settings
and is chair of ISDM2013 in Peru (www.isdm2013.org), LT is associate
professor at the Sydney School of Public Health, GE works to implement
shared decision making at Cardiff, Nijmegen, and Maastricht,
Netherlands, and Dartmouth College, USA. AMS drafted the manuscript,
and all authors worked collaboratively to contribute, edit, and agree the
final version. AMS is guarantor. The authors acknowledge three external
reviewers for their comments.
Competing interests: All authors have completed the ICJME unified
disclosure form at www.icmje.org/coi_disclosure.pdf (available on
request from the corresponding author) and declare no support from
any organisation for the submitted work; GE, DF, and VM have received
speaker honorariums, travel allowances, consulting fees, and grants
from the Foundation for Informed Medical Decision Making, and GE
has a grant from the Health Foundation. They have no other relationships
or activities that could appear to have influenced the submitted work.
Provenance and peer review: Commissioned; externally peer reviewed.
1 Elwyn G, Laitner S, Coulter A, Walker E, Watson P, Thomson R. Implementing shared
decision making in the NHS. BMJ 2010;341:c5146.
2 Option grid. Tonsillectomy or watchful waiting for children under 16 years old. 2011. www.
optiongrid.co.uk/resources/Tonsillectomyunder16_V3_06-10-11.pdf.
3 Beauchamp T L, Childress J F. Principles of biomedical ethics. 5th ed. Oxford University
Press, 2001.
For personal use only: See rights and reprints http://www.bmj.com/permissions Subscribe: http://www.bmj.com/subscribe
BMJ 2012;344:e256 doi: 10.1136/bmj.e256 (Published 27 January 2012) Page 3 of 6
ANALYSIS
4 Stacey D, Bennett CL, Barry MJ, Col NF, Eden KB, Holmes-Rovner M, et al. Decision
aids for people facing health treatment or screening decisions. Cochrane Database Syst
Rev 2011;10:CD001431.
5 Hack TF, Degner LF, Watson P, Sinha L. Do patients benefit from participating in medical
decision making? Longitudinal follow-up of women with breast cancer. Psychooncology
2006;15:9-19.
6 Légaré F, Ratté S, Stacey D, Kryworuchko J, Gravel K, Graham ID, et al. Interventions
for improving the adoption of shared decision making by healthcare professionals.
Cochrane Database Syst Rev 2010;5:CD006732.
7 Frosch DL, Moulton BW, Wexler RM, Holmes-Rovner M, Volk RJ, Levin CA. Shared
decision making in the United States: policy and implementation activity on multiple fronts.
Z Evid Fortbild Qual Gesundhwes 2011;105:305-12.
8 Légaré F, Stacey D, Forest PG, Coutu MF. Moving SDM forward in Canada: milestones,
public involvement, and barriers that remain. Z Evid Fortbild Qual Gesundhwes
2011;105:245-53.
9 Montori VM, Shah ND, Pencille LJ, Branda ME, Van Houten HK, Swiglo BA, et al. Use
of a decision aid to improve treatment decisions in osteoporosis: the osteoporosis choice
randomized trial. Am J Med 2011;124:549-56.
10 Shepherd HL, Barratt A, Trevena LJ, McGeechan K, Carey K, et al. Three questions that
patients can ask to improve the quality of information physicians give about treatment
options: a cross-over trial. Patient Educ Couns 2011;84:379-85.
11 Gagnon S, Labrecque M, Njoya M, Rousseau F, St-Jacques S, Légaré F. How much do
family physicians involve pregnant women in decisions about prenatal screening for Down
syndrome? Prenat Diagn 2010;30:115-21.
12 Ferguson T. E-patients: how they can help us heal health care. 2007. http://e-patients.
net/e-Patients_White_Paper.pdf.
13 O’Connor AM, Légaré F, Stacey D. Risk communication in practice: the contribution of
decision aids. BMJ 2003;327:736-40.
14 lwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of
equipoise: the competences of involving patients in healthcare choices. Br J Gen Pract
2000;50:892-9.
15 Towle A, Godolphin W, Grams G, Lamarre A. Putting informed and shared decision
making into practice. Health Expect 2006;9:321-32.
16 Van Tol-Geerdink JJ, Stalmeier PF, van Lin EN, Schimmel EC, Huizenga H, van Daal
WA, et al. Do prostate cancer patients want to choose their own radiation treatment? Int
J Radiat Oncol Biol Phys 2006;66:1105-11.
17 Frosch DL, May S, Rendle K, Tietbohl C, Elwyn G. Encounters with ‘gods on their high
thrones in heaven’: patient perceptions of what it takes to participate in shared decision
making. 6
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International Shared Decision Making Conference Maastricht, 19-22 June
2011 [Abstract 41, p42.]
18 Salzburg Global Seminar. Salzburg statement on shared decision making. BMJ
2011;342:d1745.
19 Edwards A, Elwyn G, Smith C, Williams S, Thornton H. Consumers’ views of quality in
the consultation and their relevance to ‘shared decision-making’ approaches. Health
Expect 2001;4:151-61.
20 Van der Weijden T, Boivin A, Burgers J, Schünemann HJ, Elwyn G. Clinical practice
guidelines and patient decision aids. An inevitable relationship. J Clin Epidemiol
(forthcoming).
21 Elwyn G, Edwards A, Hood K, Robling M, Atwell C, Russell I, Wensing M, et al. Achieving
involvement: process outcomes from a cluster randomized trial of shared decision making
skill development and use of risk communication aids in general practice. Fam Pract
2004;21:337-46.
22 Montori VM, Guyatt GH. Progress in evidence-based medicine. JAMA 2008;300:814-6.
23 Molewijk AC, Stiggelbout AM, Otten W, Dupuis H, Kievit J. Implicit normativity in
evidence-based medicine. A plea for integrated empirical ethics research. Health Care
Analysis 2003;11:69-92.
24 Hibbard JH, Greene J, Tusler M. Improving the outcomes of disease management by
tailoring care to the patient’s level of activation. Am J Manag Care 2009;15:353-60.
25 Haerter M, Van der Weijden T, Elwyn G. Policy and practice developments in the
implementation of shared decision making: An international perspective. Z Evid Fortbild
Qual Gesundhwes 2011;105: 227-326.
26 United Nations. Health literacy and sustainable development. UN Chronicle , 2009. www.
un.org/wcm/content/site/chronicle/cache/bypass/home/archive/issues2009/
healthliteracyandsustainabledevelopment.
27 World Health Organization. mHealth: new horizons for health through mobile technologies.
2011. www.who.int/goe/publications/goe_mhealth_web.pdf.
Accepted: 6 December 2011
Cite this as: BMJ 2012;344:e256
© BMJ Publishing Group Ltd 2012
For personal use only: See rights and reprints http://www.bmj.com/permissions Subscribe: http://www.bmj.com/subscribe
BMJ 2012;344:e256 doi: 10.1136/bmj.e256 (Published 27 January 2012) Page 4 of 6
ANALYSIS
Table
Table 1| Adapted tonsillectomy pathway (Cardiff ear, nose, and throat department)
Adapted pathway (using option grid)Standard pathway
Parent and child given tonsillectomy option grid to read whilst waiting for outpatient
consultation2
Parent and child attend outpatient clinic for assessment of recurrent
tonsillitis
Specialist nurse reviews referral letter and reviews the problem with the parent(s) and
child
Specialist nurse reviews referral letter and reviews the problem with the
parent(s) and child
Specialist nurse checks whether criteria for tonsillectomy are met as well as reviewing
the information in the option grid with parent(s) and child. Then uses a decision quality
measure to check understanding
Specialist nurse checks whether criteria for tonsillectomy are met.
Discussion about listing for tonsillectomy
Proceed (or not) to tonsillectomy surgical listProceed (or not) to tonsillectomy surgical list
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BMJ 2012;344:e256 doi: 10.1136/bmj.e256 (Published 27 January 2012) Page 5 of 6
ANALYSIS
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References
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Book•
Principles of biomedical ethics

[...]

Tom L. Beauchamp, James F. Childress
01 Jan 1979
TL;DR: The principles of biomedical and Islamic medical ethics and an interfaith perspective on end-of-life issues and three cases to exemplify some of the conflicts in ethical decision-making are discussed.
Abstract: Morality and ethical theory types of ethical theory the principle of respect for autonomy the principle of nonmaleficence the principle of beneficence the principle of justice professional-patient relationships ideals, virtues and conscientiousness.

13,200 citations

Journal Article•DOI•
Decision aids for people facing health treatment or screening decisions

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Dawn Stacey1, Dawn Stacey2, Krystina B. Lewis2, Michael J. Barry, Carol Bennett1, Karen Eden3, Margaret Holmes-Rovner4, Hilary A. Llewellyn-Thomas5, Anne Lyddiatt, Richard Thomson6, Lyndal Trevena7 •
Ottawa Hospital Research Institute1, University of Ottawa2, Oregon Health & Science University3, Michigan State University4, Dartmouth College5, Newcastle University6, University of Sydney7
12 Apr 2017-Cochrane Database of Systematic Reviews
TL;DR: Decision aids reduced the proportion of undecided participants and appeared to have a positive effect on patient-clinician communication, and those exposed to a decision aid were either equally or more satisfied with their decision, the decision-making process, and the preparation for decision making compared to usual care.
Abstract: Background Decision aids are intended to help people participate in decisions that involve weighing the benefits and harms of treatment options often with scientific uncertainty. Objectives To assess the effects of decision aids for people facing treatment or screening decisions. Search methods For this update, we searched from 2009 to June 2012 in MEDLINE; CENTRAL; EMBASE; PsycINFO; and grey literature. Cumulatively, we have searched each database since its start date including CINAHL (to September 2008). Selection criteria We included published randomized controlled trials of decision aids, which are interventions designed to support patients' decision making by making explicit the decision, providing information about treatment or screening options and their associated outcomes, compared to usual care and/or alternative interventions. We excluded studies of participants making hypothetical decisions. Data collection and analysis Two review authors independently screened citations for inclusion, extracted data, and assessed risk of bias. The primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were: A) 'choice made' attributes; B) 'decision-making process' attributes. Secondary outcomes were behavioral, health, and health-system effects. We pooled results using mean differences (MD) and relative risks (RR), applying a random-effects model. Main results This update includes 33 new studies for a total of 115 studies involving 34,444 participants. For risk of bias, selective outcome reporting and blinding of participants and personnel were mostly rated as unclear due to inadequate reporting. Based on 7 items, 8 of 115 studies had high risk of bias for 1 or 2 items each. Of 115 included studies, 88 (76.5%) used at least one of the IPDAS effectiveness criteria: A) 'choice made' attributes criteria: knowledge scores (76 studies); accurate risk perceptions (25 studies); and informed value-based choice (20 studies); and B) 'decision-making process' attributes criteria: feeling informed (34 studies) and feeling clear about values (29 studies). A) Criteria involving 'choice made' attributes: Compared to usual care, decision aids increased knowledge (MD 13.34 out of 100; 95% confidence interval (CI) 11.17 to 15.51; n = 42). When more detailed decision aids were compared to simple decision aids, the relative improvement in knowledge was significant (MD 5.52 out of 100; 95% CI 3.90 to 7.15; n = 19). Exposure to a decision aid with expressed probabilities resulted in a higher proportion of people with accurate risk perceptions (RR 1.82; 95% CI 1.52 to 2.16; n = 19). Exposure to a decision aid with explicit values clarification resulted in a higher proportion of patients choosing an option congruent with their values (RR 1.51; 95% CI 1.17 to 1.96; n = 13). B) Criteria involving 'decision-making process' attributes: Decision aids compared to usual care interventions resulted in: a) lower decisional conflict related to feeling uninformed (MD -7.26 of 100; 95% CI -9.73 to -4.78; n = 22) and feeling unclear about personal values (MD -6.09; 95% CI -8.50 to -3.67; n = 18); b) reduced proportions of people who were passive in decision making (RR 0.66; 95% CI 0.53 to 0.81; n = 14); and c) reduced proportions of people who remained undecided post-intervention (RR 0.59; 95% CI 0.47 to 0.72; n = 18). Decision aids appeared to have a positive effect on patient-practitioner communication in all nine studies that measured this outcome. For satisfaction with the decision (n = 20), decision-making process (n = 17), and/or preparation for decision making (n = 3), those exposed to a decision aid were either more satisfied, or there was no difference between the decision aid versus comparison interventions. No studies evaluated decision-making process attributes for helping patients to recognize that a decision needs to be made, or understanding that values affect the choice. C) Secondary outcomes Exposure to decision aids compared to usual care reduced the number of people of choosing major elective invasive surgery in favour of more conservative options (RR 0.79; 95% CI 0.68 to 0.93; n = 15). Exposure to decision aids compared to usual care reduced the number of people choosing to have prostate-specific antigen screening (RR 0.87; 95% CI 0.77 to 0.98; n = 9). When detailed compared to simple decision aids were used, fewer people chose menopausal hormone therapy (RR 0.73; 95% CI 0.55 to 0.98; n = 3). For other decisions, the effect on choices was variable. The effect of decision aids on length of consultation varied from 8 minutes shorter to 23 minutes longer (median 2.55 minutes longer) with 2 studies indicating statistically-significantly longer, 1 study shorter, and 6 studies reporting no difference in consultation length. Groups of patients receiving decision aids do not appear to differ from comparison groups in terms of anxiety (n = 30), general health outcomes (n = 11), and condition-specific health outcomes (n = 11). The effects of decision aids on other outcomes (adherence to the decision, costs/resource use) were inconclusive. Authors' conclusions There is high-quality evidence that decision aids compared to usual care improve people's knowledge regarding options, and reduce their decisional conflict related to feeling uninformed and unclear about their personal values. There is moderate-quality evidence that decision aids compared to usual care stimulate people to take a more active role in decision making, and improve accurate risk perceptions when probabilities are included in decision aids, compared to not being included. There is low-quality evidence that decision aids improve congruence between the chosen option and the patient's values. New for this updated review is further evidence indicating more informed, values-based choices, and improved patient-practitioner communication. There is a variable effect of decision aids on length of consultation. Consistent with findings from the previous review, decision aids have a variable effect on choices. They reduce the number of people choosing discretionary surgery and have no apparent adverse effects on health outcomes or satisfaction. The effects on adherence with the chosen option, cost-effectiveness, use with lower literacy populations, and level of detail needed in decision aids need further evaluation. Little is known about the degree of detail that decision aids need in order to have a positive effect on attributes of the choice made, or the decision-making process.

5,042 citations

Journal Article•DOI•
Implementing shared decision making in the NHS

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Glyn Elwyn1, Steve Laitner, Angela Coulter, Emma Walker, Paul J. Watson, Richard Thomson2 •
Cardiff University1, Newcastle University2
14 Oct 2010-BMJ
TL;DR: Creation of a platform of tools to provide information to doctors and patients should be the first step in giving patients choice about their treatment, say Glyn Elwyn and colleagues.
Abstract: Creation of a platform of tools to provide information to doctors and patients should be the first step in giving patients choice about their treatment, say Glyn Elwyn and colleagues.

788 citations

Journal Article•DOI•
Interventions for improving the adoption of shared decision making by healthcare professionals

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Dawn Stacey1, Stéphane Turcotte, Marie-Joëlle Cossi, Jennifer Kryworuchko2, Ian D. Graham3, Anne Lyddiatt, Mary C. Politi4, Richard Thomson5, Glyn Elwyn6, Norbert Donner-Banzhoff7 •
University of Ottawa1, University of Saskatchewan2, Ottawa Hospital Research Institute3, Washington University in St. Louis4, Newcastle University5, Cardiff University6, University of Marburg7
15 Sep 2014-Cochrane Database of Systematic Reviews
TL;DR: It is uncertain whether interventions to improve adoption of SDM are effective given the low quality of the evidence, but any intervention that actively targets patients, healthcare professionals, or both, is better than none.
Abstract: Background Shared decision making (SDM) is a process by which a healthcare choice is made jointly by the practitioner and the patient and is said to be the crux of patient-centred care. Policy makers perceive SDM as desirable because of its potential to a) reduce overuse of options not clearly associated with benefits for all (e.g., prostate cancer screening); b) enhance the use of options clearly associated with benefits for the vast majority (e.g., cardiovascular risk factor management); c) reduce unwarranted healthcare practice variations; d) foster the sustainability of the healthcare system; and e) promote the right of patients to be involved in decisions concerning their health. Despite this potential, SDM has not yet been widely adopted in clinical practice. Objectives To determine the effectiveness of interventions to improve healthcare professionals’ adoption of SDM. Search methods We searched the following electronic databases up to 18 March 2009: Cochrane Library (1970-), MEDLINE (1966-), EMBASE (1976-), CINAHL (1982-) and PsycINFO (1965-). We found additional studies by reviewing a) the bibliographies of studies and reviews found in the electronic databases; b) the clinicaltrials.gov registry; and c) proceedings of the International Shared Decision Making Conference and the conferences of the Society for Medical Decision Making. We included all languages of publication. Selection criteria We included randomised controlled trials (RCTs) or well-designed quasi-experimental studies (controlled clinical trials, controlled before and after studies, and interrupted time series analyses) that evaluated any type of intervention that aimed to improve healthcare professionals' adoption of shared decision making. We defined adoption as the extent to which healthcare professionals intended to or actually engaged in SDM in clinical practice or/and used interventions known to facilitate SDM. We deemed studies eligible if the primary outcomes were evaluated with an objective measure of the adoption of SDM by healthcare professionals (e.g., a third-observer instrument). Data collection and analysis At least two reviewers independently screened each abstract for inclusion and abstracted data independently using a modified version of the EPOC data collection checklist. We resolved disagreements by discussion. Statistical analysis considered categorical and continuous primary outcomes. We computed the standard effect size for each outcome separately with a 95% confidence interval. We evaluated global effects by calculating the median effect size and the range of effect sizes across studies. Main results The reviewers identified 6764 potentially relevant documents, of which we excluded 6582 by reviewing titles and abstracts. Of the remainder, we retrieved 182 full publications for more detailed screening. From these, we excluded 176 publications based on our inclusion criteria. This left in five studies, all RCTs. All five were conducted in ambulatory care: three in primary clinical care and two in specialised care. Four of the studies targeted physicians only and one targeted nurses only. In only two of the five RCTs was a statistically significant effect size associated with the intervention to have healthcare professionals adopt SDM. The first of these two studies compared a single intervention (a patient-mediated intervention: the Statin Choice decision aid) to another single intervention (also patient-mediated: a standard Mayo patient education pamphlet). In this study, the Statin Choice decision aid group performed better than the standard Mayo patient education pamphlet group (standard effect size = 1.06; 95% CI = 0.62 to 1.50). The other study compared a multifaceted intervention (distribution of educational material, educational meeting and audit and feedback) to usual care (control group) (standard effect size = 2.11; 95% CI = 1.30 to 2.90). This study was the only one to report an assessment of barriers prior to the elaboration of its multifaceted intervention. Authors' conclusions The results of this Cochrane review do not allow us to draw firm conclusions about the most effective types of intervention for increasing healthcare professionals' adoption of SDM. Healthcare professional training may be important, as may the implementation of patient-mediated interventions such as decision aids. Given the paucity of evidence, however, those motivated by the ethical impetus to increase SDM in clinical practice will need to weigh the costs and potential benefits of interventions. Subsequent research should involve well-designed studies with adequate power and procedures to minimise bias so that they may improve estimates of the effects of interventions on healthcare professionals' adoption of SDM. From a measurement perspective, consensus on how to assess professionals' adoption of SDM is desirable to facilitate cross-study comparisons.

712 citations

Journal Article•
Shared decision making and the concept of equipoise: the competences of involving patients in healthcare choices.

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Glyn Elwyn1, Adrian Edwards1, Paul Richard Kinnersley1, Richard Grol1•
University of Wales1
01 Nov 2000-British Journal of General Practice
TL;DR: Experienced GPs with educational roles have positive attitudes to the involvement of patients in decisions, provided the process matches the role individuals wish to play, and a set of competences and steps that would enable clinical practitioners (generalists) to undertake 'shared decision making' in their clinical environment are proposed.
Abstract: BACKGROUND: Involving patients in healthcare decisions makes a potentially significant and enduring difference to healthcare outcomes. One difficulty (among many) is that the 'involvement' of patients in decisions has been left undefined. It is usually conceptualised as 'patient centredness', which is a broad and variably interpreted concept that is difficult to assess using current tools. This paper attempts to gauge general practitioners' (GPs') attitudes to patient involvement in decision making and their views about the contextual factors, competences, and stages required to achieve shared decisions within consultations. AIM: To explore and understand what constitutes the appropriate involvement of patients in decision making within consultations, to consider previous theory in this field, and to propose a set of competences (skills) and steps that would enable clinical practitioners (generalists) to undertake 'shared decision making' in their clinical environment. METHOD: Qualitative study using focus group interviews of key informants. RESULTS: Experienced GPs with educational roles have positive attitudes to the involvement of patients in decisions, provided the process matches the role individuals wish to play. They perceive some clinical problems as being more suited to a cooperative approach to decision making and conceptualised the existence of professional equipoise towards the existence of legitimate treatment options as an important facilitative factor. A sequence of skills was proposed as follows: 1) implicit or explicit involvement of patients in the decision-making process; 2) explore ideas, fears, and expectations of the problem and possible treatments; 3) portrayal of equipoise and options; 4) identify preferred data format and provide tailor-made information; 5) checking process: understanding of information and reactions (e.g. ideas, fears, and expectations of possible options); 6) acceptance of process and decision making role preference; 7) make, discuss or defer decisions; 8) arrange follow-up. CONCLUSIONS: These clinicians viewed involvement as an implicit ethos that should permeate medical practice, provided that clinicians respect and remain alert to patients' individual preferred roles in decision making. The interpersonal skills and the information requirements needed to successfully share decisions are major challenges to the clinical consultation process in medical practice. The benefits of patient involvement and the skills required to achieve this approach need to be given much higher priority at all levels: at policy, education, and within further professional development strategies.

712 citations

Related Papers (5)
Decision aids for people facing health treatment or screening decisions

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12 Apr 2017-Cochrane Database of Systematic Reviews
Dawn Stacey, Dawn Stacey, Krystina B. Lewis, Michael J. Barry, Carol Bennett, Karen Eden, Margaret Holmes-Rovner, Hilary A. Llewellyn-Thomas, Anne Lyddiatt, Richard Thomson, Lyndal Trevena 
Shared Decision Making: A Model for Clinical Practice

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23 May 2012-Journal of General Internal Medicine
Glyn Elwyn, Glyn Elwyn, Dominick L. Frosch, Dominick L. Frosch, Richard Thomson, Natalie Joseph-Williams, Amy Lloyd, Paul Richard Kinnersley, Emma Cording, Dave Tomson, Carole Dodd, Stephen Rollnick, Adrian Edwards, Michael J. Barry 
Shared decision-making in the medical encounter: What does it mean? (or it takes at least two to tango)

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01 Mar 1997-Social Science & Medicine
Cathy Charles, Amiram Gafni, Timothy J. Whelan
Shared Decision Making — The Pinnacle of Patient-Centered Care

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29 Feb 2012-The New England Journal of Medicine
Michael J. Barry, Susan Edgman-Levitan
Barriers and facilitators to implementing shared decision-making in clinical practice: Update of a systematic review of health professionals’ perceptions

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01 Dec 2008-Patient Education and Counseling
Stéphane Ratté, Karine Gravel, Ian D. Graham
Frequently Asked Questions (13)
Q1. What are the contributions mentioned in the paper "Shared decision making: really putting patients at the centre of healthcare" ?

However, best practices are gradually emerging, and below the authors provide examples—tactics and strategies that clinicians and their organisations can use to support patients to become involved in decision making. 

The first and most important step in shared decision making in preference sensitive decisions13 is creating awareness of equipoise—that is, explaining to the patient that there is no best choice, that a decision has to be made, and that doing nothing or keeping the status quo is also an option. 

Several countries, including the United States and Canada, have used multifaceted interventions targeted at systems or practices to implement shared decision making. 

Literacy levels among patients may be low and cultural factors may require communication strategies that are more inclusive of family and friends. 

New innovations using mobile phone technologies have recently become more common in low resource settings, although most have been unidirectional—either collecting data or issuing reminders or health promotional material. 

Clinical practice guidelines could promote shared decision making by highlighting decision points and suggesting what information to communicate about reasonable options and how to involve patients. 

Simple changes to clinical pathways create opportunities for more shared decision making—for example, an adapted pathway for children referred for an opinion regarding tonsillectomy (table⇓). 

Health Care Analysis 2003;11:69-92.24 Hibbard JH, Greene J, Tusler M. Improving the outcomes of disease management by tailoring care to the patient’s level of activation. 

The Center for Shared Decision Making at Dartmouth Hitchcock Medical Center in the US provides service and training to patients and clinicians (http://patients.dartmouth-hitchcock.org/shared_decision_ making.html). 

There is evidence, however, that if patients with lower literacy are provided with well designed information and given appropriate support they participate equally well and stand to benefit the most by becomingmore aware of the evidence. 

There is real potential for these to become more interactive and provide a platform for shared decision making in low income countries. 

In many of the initiatives described above, patients participate in developing indicators for quality of care, in the education of health professionals, and in the development of patient centred services. 

1 Typical shared decision making consultation using a tonsillectomy option grid2Mother: The authorwas hoping tonsillectomy would stop Anna missing so much school.