Shared decision making in realistic medicine: what works

4. What works in encouraging greater engagement of SDM in clinical consultations?

Encouraging greater engagement of SDM in clinical consultations will require a culture change above all else. It will require culture changes at multiple levels (e.g. clinicians, their organisations and patients) and as such it is a complex task (Stiggelbout, et al., 2015). This section highlights ways in which such change might be supported. This comprises a discussion of the key conditions that encourage SDM, in terms of effective tools, skills and attitudes. Some examples of good practice case studies are also provided.

4.1 What are the key conditions of an SDM process?

This section highlights the key conditions that need to be present to ensure good quality SDM can occur. Recognition of, and achieving, these conditions will also act as solutions to several of the barriers mentioned in Section 3. Some need to be present before any process of SDM can begin (e.g. trusting relationship; recognition of power imbalances; patients as active rather than passive healthcare participants) but others will emerge through good patient and clinician acceptance, and use, of SDM.

As Fisher et al (2018, p. 9) highlight, 'patient readiness to engage in SDM is related to their knowledge, emotional state, and power balance with their clinician' and once these things are in place the other conditions should soon follow. Table 2 summarises these key conditions, noting the sources and the availability and strength of the evidence (i.e. based on number of studies and type of studies). It will be important to keep these conditions in mind when considering the implications of, and current evidence for, interventions.

Table 2: Key conditions to enable an SDM process

Condition	Source	Availability & Strength of evidence[8]
Trusting relationship between patient, clinician and healthcare system	(Fisher, et al., 2018) (Carter & Martin, 2018) (Gulbrandsen, et al., 2016)	Discussed in several qualitative studies as key. Draws on a range of other studies, including systematic reviews
Recognition of power imbalances between patient, clinician and healthcare system	(Coulter, et al., 2011) (Fisher, et al., 2018) (Joseph-Williams, et al., 2014)	Discussed in several qualitative studies as key, including large scale studies and systematic reviews
Patients viewed as active rather than passive participants in their healthcare	(Fisher, et al., 2018) (Walach & Loughlin, 2018) (Joseph-Williams, et al., 2017)	Discussed to a degree in several studies but often the existence of this condition appears to be assumed rather than explicitly discussed
Policy climate that appreciates the importance of SDM	(Coulter, et al., 2011) (Gravel, et al., 2006) (Joseph-Williams, et al., 2017)	Discussed to a degree in several studies including a systematic review, but often the existence of this condition appears to be assumed rather than explicitly discussed
Patient acceptance of, and desire to participate in, SDM (i.e. some older patients may not accept SDM as tolerant of paternalistic model)	(Coulter, et al., 2011) (Fisher, et al., 2018) (Leppin, et al., 2014) (Shay & Lafata, 2015)	Discussed to a degree in several studies but often the existence of this condition appears to be assumed rather than explicitly discussed
Patient's understanding of the decision options	(Coulter, et al., 2011) (Fisher, et al., 2018)	Widely discussed in a range of studies, including a systematic review
Availability of decision support information and tools	(Coulter, et al., 2011) (Elwyn, et al., 2017)	Discussed to a degree in several studies - both qualitative and quantitative studies which draw on several other examples.
Patient and clinical champions of SDM at Board level	(Coulter, et al., 2011)	Discussed conceptually in a systematic review
Evidence base of benefits and risks of treatments and options accessible to all clinicians	(Coulter, et al., 2011)	Discussed to a degree in several studies, including a systematic review, but often the existence of this condition appears to be assumed rather than explicitly discussed
Clinicians acceptance of, and desire to participate in, SDM	(Gravel, et al., 2006)	Discussed to a degree in several studies but often the existence of this condition appears to be assumed rather than explicitly discussed

These conditions involve a range of Individual, NHS Board and System level actions but much of the evidence (Carter & Martin, 2018; Coulter, et al., 2011; Elwyn, et al., 2016; Coulter, et al., 2011; Jacobsen, et al., 2018) has shown that the culmination of these should create the right conditions to enable SDM, and normalise it as the main method for healthcare decision making in Scotland. Furthermore, lack of many of these conditions were presented as barriers in Section 3. The first four conditions are foundational, and were most widely and strongly evidenced. They are discussed below in terms of how they can be put in place.

Trusting relationships

Trust is of upmost importance to SDM processes as it requires the development of a new relationship between patient and clinician (and the wider system), with potentially more vulnerability. Trusting relationships can be encouraged in a number of ways.

• The time spent within an appointment on the meaningful conversation could be increased, by raising awareness of the importance of the meaningful conversation, and promoting a style of appointment which provides the patient with more space and time to discuss their preferences. This requires a change from current practices in which clinicians tend to speak for most of the appointment (Legare, et al., 2008).
• Encouraging clinicians (through training) to recognise when SDM might be appropriate and well-received, whilst simultaneously training patients in having the self-belief to undertake it and even ask for it. Research has shown that currently patients are more likely to participate in SDM processes for more minor decisions (Fisher, et al., 2018) and the level of SDM may depend on level of familiarity (e.g. level of trust). For instance, a patient may be happy to engage with their GP about a prostate cancer screening, but not happy to engage with the oncologist about treatment decisions shortly after diagnosis (Fisher, et al., 2018).
• According to Gulbrandsen (2016, p. 1507) a trusting relationship has two parts: 'trust in the power of medicine to reduce risk, and trust in the belief that physicians in general are benevolent'. One way to encourage the trust in medicine is ensuring accurate and easily accessible information on the risks and benefits of treatments. Thus a trusting relationship can be encouraged in a number of ways, and each of these relate to (clinicians and patients) having a better recognition of the (changing) power imbalances related to SDM.
• Poor continuity of care can be a barrier to building trusting relationships, due to the involvement of too many clinicians in a patient's care or a lack of consistency of clinicians during a course of treatment (Joseph-Williams, et al., 2014). Efforts should be made to try to ensure better practices for continuity of care. Patients could be empowered to take a more active role in their healthcare by having a say in who is involved in their treatment and building therapeutic relationships with their clinicians (and vice versa) (Freeman & Hughes, 2010).
• Better recognition that the power imbalances may differ across different patient groups, for instance older people often tend to relinquish all power to the doctor (Bastiaens, et al., 2007). Thus there needs to be additional training to raise awareness of the potential specific concerns of particular groups.

Recognition of power imbalances

Recognition of these common power imbalances are important to ensure SDM can occur and again there are a number of ways in which they can be handled, related to clinician training and changes in attitudes. SDM denotes changes to the roles played by patients and clinicians and each requires additional training, such as:

• Health Board officials could undergo training on 'SDM in practice' (Gulbrandsen, et al., 2016), so they can highlight good practice within their boards.
• 'The balance of medical knowledge and social power in the provider-patient relationship is nearly always tipped toward physicians' (Makoul & Clayman, 2006, p. 307). Training for clinicians on how to undertake their new role as a curators is needed (Gulbrandsen, et al., 2016). This role comprises presenting information on the potential benefits and risks of treatments in as neutral a way as possible (e.g. clinician should not present an option as preferential without considering the preferences of the patient).
• To best recognise power imbalances patients need to be confident to undertake their role as more active patients, facilitated through national campaigns and education.
• The power imbalances may also be more apparent depending on age, ethnicity or certain conditions (Bastiaens, et al., 2007; Belcher, et al., 2006; Peek, et al., 2009). As such there may be a role for advocates to ensure particular power imbalances do not negatively impact on the SDM processes, and ensure patients of all circumstances are actively involved in their healthcare when desired (Coulter & Collins, 2011).

Patients viewed as active rather than passive participants in their healthcare

The popular and pervasive view of the patient as a passive recipient of healthcare held by some patients and clinicians (emerging from the model of paternalism) needs to be altered to one in which the patient is more active in their healthcare decisions (Walach & Loughlin, 2018). This active role is generally welcomed by patients who desire greater involvement in decision making, with often better outcomes (Legare & Thompson-Leduc, 2014; Hack, et al., 2006; Hibbard & Greene, 2013). However there also needs to be a recognition that certain groups of patients may not desire a more active role. For example, older people are often wary of SDM as they are used to 'doctor knows best'.

Although assurances need to be made to determine if the choice of a more passive role is actually a preference, or related to low self-efficacy (Legare, et al., 2011). Research has highlighted that even patients with lower levels of self-efficacy still want to be involved in the discussions about their care (Makoul & Clayman, 2006), even if they cannot be involved in the decisions per se.

Recognition also needs to be maintained that certain groups of patients may need additional support to effectively self-manage and become more active participants in their healthcare (through various support tools and training) (Belcher, et al., 2006). The ability to self-manage conditions is particularly important for empowering patients with longer term conditions (Lhussier, et al., 2013). Changes are needed to encourage the idea of the active patient wherever it is possible, and welcomed by the patients. Thus there needs to be effective person-centred care policies (and supportive clinicians) in place to support patients with longer-term care to participative as actively as possible in their healthcare

Policy climate that appreciates the importance of SDM

Policy-makers have a vital role to play in promoting the importance of SDM through simultaneously ensuring healthcare systems facilitate good SDM (e.g. person-centred approaches to healthcare) and empowering patients and clinicians to accept and promote SDM. To date, Scotland has undertaken some activities that highlight a policy climate appreciative of SDM, namely:

• The drive towards Realistic Medicine by the CMO demonstrates its focus on SDM.
• An interest in gathering the views of clinicians and patients (e.g. Realistic Medicine Survey, Citizen's Jury) and a commitment to carefully consider and reply to each of the emerging recommendations strengthened this focus further.
• The move towards a more person-centred healthcare system (e.g. House of Care).
• The promotion of supporting self-management of health (aided by technology and better understanding of contributing lifestyle factors) also shows appreciation for some key SDM aspects (e.g. involving the patient more in their own healthcare).

There are also some other activities that could strengthen this focus in Scotland further:

• Measuring quality and efficiency of healthcare systems based on person-centred measures (e.g. patient and clinician wellbeing) rather than only targets such as waiting times/ lists.
• A greater focus on SDM as a spectrum (Makoul & Clayman, 2006) in which people in different contexts with different characteristics and circumstances can, and feel able to, participate in SDM at a level at which they (and their clinicians and families) are receptive to.
• Moving towards healthcare systems which are proactive rather than reactive. The Chronic Care model (Coulter, et al., 2013) highlighted that healthcare systems tend to be reactive (responding to patients when they are sick) rather than proactive (promoting and supporting patients to self-manage their healthcare). Coulter et al (2013) called for the overturn of this to better support patients with longer-term conditions (who spend the majority of their time self-managing their conditions).

These conditions are foundational. The other conditions can emerge once the foundations are firm. Effective tools, skills and attitudes may help encourage the other conditions.

4.2 Effective tools, skills and attitudes for SDM

This section provides an illustration of some key tools, skills and attitudes that have been effective in promoting SDM at different levels. Relative strengths and weaknesses are also considered, as no activity can improve SDM in all contexts (Joseph-Williams, et al., 2017).

There needs to be recognition that different clinicians and patients will have various motivations for participating in SDM (MAGIC programme evaluation, 2013). In fact changing attitudes may well be the most effective activity, and thus if they can be changed then the associated tools and skills will be more likely to succeed. This was highlighted as a key learning point from the MAGIC programme whereby 'skills trump tools, and attitudes trump skills' (Joseph-Williams, et al., 2017, p. 2).

The categorisation into individual appointment, board and system level is an adaptation of categorisations in the literature and has been informed by the stakeholder discussions and the earlier sections of this report.

Individual appointment level

Tools:

The literature highlighted a number of tools that either had been effective in promoting SDM or were considered to be potentially effective, for the individual patient or clinician. Decision aids (e.g. Option Grids and Brief Decision Aids) are effective facilitators for initiating an SDM process due to being simple to use and effectively promoting consistent practices across clinical teams and patients, (MAGIC programme evaluation, 2013), particularly in-consultation aids (Joseph-Williams, et al., 2017).

However a wide range of decision aids are needed to recognise varying levels of health literacy and self-efficacy, and they do not necessarily prepare the patient for SDM in terms of prior groundwork (Joseph-Williams, et al., 2014). Additionally, although there has been little evaluation carried out to date, numerous authors (Elwyn & Buckman, 2015; Tsulukidze, et al., 2014) suggested recording consultations may be effective for encouraging SDM as it allows patients a precise record of the conversations, and thus greater ability to reflect on options and participate in meaningful conversations. Thus these tools can help to create more meaningful conversations and improve the knowledge of clinicians and patients.

Skills:

Similarly, effective communication skills (for example practiced through role-play) will enable patients and clinicians to have more meaningful conversations through managing their expectations and improving their level of knowledge. Better communication skills within SDM will raise the confidence of less experienced clinicians, and manage the expectations of more experienced clinicians who may feel SDM is too time consuming. As identified in the evaluation of the MAGIC programme (MAGIC programme evaluation, 2013), better communication skills were recommended to improve future SDM uptake, as MAGIC found it difficult to engage more senior clinicians who felt they lacked the time to participate in SDM, which may also connect to changes in attitudes.

Attitudes:

Fostering good attitudes to SDM is key. In their evaluation of the MAGIC programme, Joseph-Williams et al (2017, p. 3) recommended that 'we need to change attitudes to reflect this [importance of patient and clinician knowledge], so that patients are not seen as "non-compliant" if they have a different opinion and clinicians are not seen as overly paternalistic if they are listening to the patients preferences and considering this in a recommended treatment plan'. To achieve this attitude change the key conditions of Section 4.1 provide some helpful discussions as the findings here highlighted the importance of trust, recognition of long-standing imbalance of power and empowering patients and clinicians to participate in SDM. Changing individual attitudes will also help to manage the expectations of all those involved in SDM.

Board level

Tools:

There are numerous tools that can be promoted at NHS Board level. Boards (rather than individuals) have more control over tools that can improve the efficiency of the health services and as such the potential for SDM. Research has highlighted that assessing the baseline of local teams (e.g. their motivations and readiness to engage with SDM) may result in more tailored and thus more effective approaches to SDM implementation (MAGIC programme evaluation, 2013). Additionally the creation of better digital databases of the risks and benefits of treatment options (including multiple chronic conditions, and more evidence on the lack of benefits of certain treatments) for clinicians (Coulter, et al., 2013) would be helpful in reducing the lack of knowledge and enabling more meaningful conversations. This also relates to the utilisation of a tool on sharing available evidence (including patient experience where possible) on the practical benefits of SDM to clinicians, patients and their outcomes, as well as improving access to patient records across different health and social care departments to improve the continuity of care.

Skills:

Research has shown healthcare professionals need to be encouraged and supported in their new roles as curators of various forms of information and knowledge (Gulbrandsen, et al., 2016). This requires additional and more extensive training which could be best offered at board level. According to Zeuner et al (2014), ensuring more extensive training of clinicians both pre- and post- licensure can help to increase their SDM skills. Training via simulations and role plays should be offered at Board level to create more opportunities to see consistent forms of 'SDM in practice' (MAGIC programme evaluation, 2013), (e.g. see case study in Section 4.3). Fisher et al (2018, p. 7) have called for clinicians to be equipped 'with the skills to engage patients in SDM when patients are willing, and to use other strategies to achieve a patient-centred decision when patients prefer not to participate in SDM', including not making assumptions about a patient's preferences - this could be most effectively implemented at Board level by way of training and education campaigns, and help to reduce the barriers around the meaningful conversation.

Attitudes:

Attitudes at the board level can have a big impact on the subsequent attitudes of individual clinicians and patients in terms of if they feel valued, and confident enough to participate in SDM (Joseph-Williams, et al., 2017). The MAGIC programme implemented changes in two boards in England and Wales and the evaluation highlighted the importance of embedding SDM through creation of the right leadership, culture and behaviours - much of which can be implemented at board level.

Boards need to promote the best version of SDM (e.g. a process rather than a single occurrence) , and decisions are made at a time that is appropriate for the patient. Boards should encourage patient and clinician SDM champions to demonstrate 'visible organisational buy-in and support' (Joseph-Williams, et al., 2017, p. 3), ensure confidence for undertaking SDM, and reduce the barriers around knowledge and expectations.

System level

Tools:

System level tools refer to those that are implemented at the national level. Much of the literature and evaluations call for greater evidence of the success and benefits of SDM, by way of measurement tools (Engaging Patients in Patient Safety, 2016). Evaluation is one method which involves 'systematically assessing an initiative's design, implementation, and results to learn or influence decisions [and] it requires collecting and analyzing information about the program's activities, characteristics, and outcomes (Engaging Patients in Patient Safety, 2016). Specifically they could be in a range of forms such as scorecards or fuller toolkits (CEPPP Evaluation Toolkits; Scottish Health Council Participation Toolkit, 2014).

Having better tools to measure SDM (in terms of person-centred care benefits and cost-effectiveness) will give more weight to the process of SDM and create more pressure for further promotion and acceptance across Scotland. In tandem there is a call for more education to raise awareness of the benefits of SDM, what an SDM process would look like 'in practice', and how patients, clinicians and boards can best 'train for' their new roles. (Engaging Patients in Patient Safety, 2016). These tools could reduce disbelief that SDM will happen and increase the evidence base around the concept.

Skills:

Skills to enhance system level engagement with SDM are similar to those at the appointment and board level in terms of better communication skills. These include promoting the benefits of SDM and ensuring buy-in of senior officials, patients and clinicians (Engaging Patients in Patient Safety, 2016; MAGIC programme evaluation, 2013), and could reduce disbelief that SDM will happen, and create more realistic expectations of SDM.

Attitudes:

Recommendations from the literature for changing system level attitudes begins with leading by example, and promoting the importance of SDM and active patients throughout society. Within Scotland one way in which this has been enacted is through the CMO's drive for Realistic Medicine. Policy-makers play an important role in changing the expectations of patients, clinics and organisations that SDM will actually happen. Recommended ways to achieve this are the use of local facilitators (clinical peers with relevant knowledge, experience and enthusiasm) to support others who are implementing SDM and to get buy-in from senior leaders, managers and commissioners (MAGIC programme evaluation, 2013).

Overall, a mixture of these tools and skills will be needed to facilitate SDM, prompted by a change in attitudes at each level. The table below summarises the examples in this section, and the case studies in the following section highlight some practical examples where some of these tools, skills and attitudes have been successfully put into practice.

Table 3: Summary of effective tools, skills and attitudes for greater SDM

Level	Tools	Skills	Attitudes
Individual appointment	In-consultation decision aids; recording consultations	Enhancing communication skills of clinicians	Ensuring receptiveness and awareness of clinicians and patients to SDM
Board	Identifying baseline SDM readiness and motivation of local teams; more efficient practices	Training in SDM throughout clinician career	Promotion of SDM through clinical and patient champions
System	Tools to measure SDM successes; raising awareness through education	Communicating benefits of SDM effectively	Leading by example

4.3 Case study examples

In this section some exemplar case studies are highlighted. These emphasise the impact that particular changes can have on encouraging greater SDM in terms of raising public awareness, use of navigator tools and role playing, and through devising a new framework for the 'person' in their healthcare. These represent changes at the Individual, Board and System level and although often context specific, provide suggestions for good practice.

Case Study: Raising Public Awareness through a range of audio-visual tools

Location: Newcastle, Northumbria and Cardiff Health Boards/ Foundations

Level: Board Level

This work was carried out within the Health Foundation's MAGIC (Making good decisions in collaborations) programme (Joseph-Williams, et al., 2017). MAGIC (2010-2013) aimed to demonstrate SDM can 'feasibly, affordably and sustainably become a core characteristic of routine clinical care' and build practical and transferable knowledge of how to increase SDM engagement. Newcastle and Cardiff were used as case study sites. An evaluation^[9] of the study (MAGIC programme evaluation, 2013), found that using a range of audio-visual tools was beneficial to promoting the aims and values of SDM across the case study areas. These tools included 'What is SDM' and 'Ask 3 Questions', whereby patients were encouraged to ask clinicians about their treatment/care: 1) What are my options; 2) What are the possible benefits/risks; and 3) How can we make a decision together that is right for me.

The Ask 3 questions campaigns was promoted across surgeries in the form of posters, leaflets, and DVDs played in surgery waiting rooms. A survey on their effectiveness was sent to participating surgeries, with 54% of respondents saying the SDM DVDs had been extremely or somewhat important/ valuable. 64% of respondents believed the posters had been extremely or somewhat important/ valuable in helping them to implement SDM.

Evidence of impact: Several authors (Lloyd, et al., 2013; Legare & Thompson-Leduc, 2014) have spoken of the need for a culture change whereby SDM is accepted as the future direction for health care decision-making. Raising awareness further is a step in the right direction. Research has shown (Joseph-Williams, et al., 2017) that obtaining public acceptance of, and desire for, an issue is often the most effective means to change. Thus it is the role of government and policy to support and encourage such engagement (Elwyn, et al., 2016). The MAGIC evaluation considered these to be effective means in delivering and embedding SDM in clinical settings, however there are nevertheless some additional issues to consider (Scottish Health Council, 2014). The techniques require buy-in from patients, clinicians and senior officials, patients may be reluctant to ask questions in their appointments due to limited time (making it difficult for the healthcare professional to gauge understanding), and the tools may be difficult for those with lower health literacy. However, hopefully this evidence will empower patients and clinicians to participate.

Case study: Shared Decision Making simulations and role-plays

Location: NHS Lothian, NHS Borders, NHS Lanarkshire

Level: Board

One of the main barriers to increased uptake of SDM is that some clinicians incorrectly perceive they are already delivering SDM. The MAGIC evaluation (MAGIC programme evaluation, 2013), found that demonstrating good quality SDM through role-play was a good means to challenge this clinician complacency. Within Scotland these role-play demonstration workshops (simulations) are carried out by 'Effective Communication for Healthcare' (EC4H) entitled 'Shared Decision Making and Informed Consent: Realistic Medicine in practice'. In these workshops healthcare professionals are guided through good quality SDM practices facilitated by senior clinicians in the form of role-plays. The simulated scenarios are suggested by the participants and they work together in small groups to identify appropriate words and mannerisms to enable quality SDM in each situation.

The workshops allow consultants to practice different styles of SDM within a safe and constructive environment. The workshops delve more deeply into the question of 'what matters to you'. Recognising that this is a large and difficult question to answer, suggestions are offered on how to make these conversations more manageable and meaningful.

Evidence of impact: As these workshops have only recently taken place there is not yet any published evaluation on their impact on the practices of participants. However anecdotally, feedback (in the form of end of workshop feedback forms) from prior workshops has been very positive, with most participants valuing the experience of learning with and from people from different disciplines and backgrounds. After the workshop, participants felt more confident to: communicate the benefits and risks of treatment in a balanced way with patients; manage patients and families unrealistic expectations of treatment and outcomes after the workshop; use decision aids to support their SDM practice; and, help patients to understand clinical outcomes of their treatment and gaining consent for treatment. Some participants appreciated being able to have a safe environment where they could be open and honest and others valued the opportunity to test different communication skills.

Overall, roleplaying is beneficial to SDM as it offers opportunity to learn the processes and skills of SDM in an context that is safe and positive. Zeuner et al (2014) have taken this idea one step further suggesting the use of simulation centres, which currently used for improving general clinical skills, to practice SDM communication skills. One aspect to be aware of is health literacy, and steps should be taken within these simulations to ensure that as many people as possible can benefit from the impacts of this training.

4.4 Summary

This section has highlighted some practical examples from recent evidence on encouraging greater engagement in SDM. Implementing any of these changes requires some societal and cultural level changes, which are of course not easy to carry out. Nevertheless steps are being taken to further SDM, particularly in Scotland. To further this progress SDM needs to be accepted at each level (individual, board and system) in terms of the right attitudes and facilitated by numerous tools, through clinical and patient champions, a good digital database of the risks and benefits of treatments, and continued and consistent training and education of patients, clinicians and senior officials on the importance of SDM and how the process can work in reality. By having the right attitudes at system level to encourage the right attitudes at all other levels the success of SDM as the normal means of healthcare delivery in Scotland will become more likely. This can be strengthened further through encouraging the key conditions, effective means to measure the successes of SDM and improving the communication skills of clinicians and patients when discussing 'what matters to you'.