Shared decision making in realistic medicine: what works

Annex 2: Overview of evidence base and gaps

The evidence used in this report comprises studies predominantly from UK, USA and Canada. Several studies are theoretical or conceptual, or drawing on qualitative primary data, whilst many of the remaining studies are systematic reviews or meta-analyses which mainly comprise of quantitative data (to quantify the degree to which SDM taking place, its impact, or frequency of cited barriers), as well as some meta-analysis of qualitative studies.

The majority of the articles in this report are qualitative in nature because the report's aims and objectives are centred on perceptions and experiences of SDM (subject matter more aligned to qualitative research). A few studies represent findings from national or international studies (Coulter, 2006; Bastiaens, et al., 2007), while the theoretical or conceptual studies tend to focus on wider issues such as system level impacts (Elwyn, et al., 2016; Legare & Thompson-Leduc, 2014). In terms of specific patient groups, literature was identified on older people (Belcher, et al., 2006), young adults (Joseph-Williams, et al., 2014), and the particular roles of the patient and clinician when the patient has particular needs or conditions (e.g. mental health issues, dementia) (Bhatt, et al., 2018).

The evidence in this report appears to be fairly representative of the wider literature on SDM, however the focus here was more on the general barriers to, and facilitators of, better SDM practices. Thus more dedicated research may be warranted on specific patient groups in the future, especially as SDM becomes more commonplace in health decisions, and people continue to live with increasing numbers of chronic conditions (Coulter, et al., 2013).

Although SDM appears a term that is widely discussed, there is no single definition (as highlighted in Section 2). Nevertheless, SDM publications have 'increased exponentially in major medical journals from 1996-2011' (Legare & Thompson-Leduc, 2014, p. 48), and there has been a 611% increase in published articles on SDM between 2003-2013.

Traditionally many publications focussed on the creation, and testing, of decision aids as tools for SDM (Fisher, et al., 2018; Elwyn, et al., 2013; Wyatt, et al., 2014). Recently there has been a shift towards wider consideration of the drivers and impacts of SDM. This comes as decision aids have been increasingly recognised as good facilitators for SDM discussions, but not as evidence of the occurrence of an SDM process per se (Legare, et al., 2008; Edwards, et al., 2004; Montori, 2007). This shift has even lead to discussions around the concept of SDM being too narrow (Elwyn, et al., 2016). Nevertheless, there is a literature gap which could be looked at in future research, in terms of whether decision aid use leads to more SDM.

The focus of studies tends to be on the interaction between patient and clinician rather than on interactions with other healthcare professionals or broader system level factors.

There is increasing amounts of literature on the barriers to SDM (Carter & Martin, 2018; Legare, et al., 2008; Gravel, et al., 2006), however gaps occur in providing effective solutions to these barriers in terms of system level factors (Elwyn, et al., 2016). Literature is also emerging in other fields around Realistic Medicine to raise awareness of the importance of patient preferences (Gawande, 2014), which may highlight the importance of system level factors to a more diverse audience.

The focus on person-centred care, and empowerment of patients has also gained traction in recent years, coinciding with the 'demographic timebomb' (Layzell, et al., 2009). This refers to a combination of overburdened health services, rise in chronic conditions and an increasingly ageing population. There is substantial evidence to emphasise that patients want more involvement in their healthcare decision-making, increased knowledge of their conditions and accurate evidence of risks and benefits and self-management strategies.

Discussions are emerging on the key conditions necessary for SDM to occur, such as trust, and recognition of power imbalances (Fisher, et al., 2018; Elwyn, et al., 2016), and how these can be achieved for both patient and clinician (Halpern, 2018). Relatedly, debates exist in the literature on how to define SDM (Legare & Thompson-Leduc, 2014; Elwyn, et al., 2013) and what an SDM process might look like (Elwyn, et al., 2017; Legare, et al., 2008).

In terms of major conceptual gaps, these remain around discussions of larger scale system and organisational factors (e.g. beyond the individual clinician-patient relationship) as well as some gaps on involvement of SDM with other healthcare professionals (Gravel, et al., 2006) and on the longer term societal impacts of SDM (Elwyn, et al., 2013). Much of the evidence calls for research into evaluations of SDM processes to enable better measurement of instances of SDM (Legare & Thompson-Leduc, 2014; Shay & Lafata, 2015).

However as Leppin et al (2014, p. 3375) highlight, 'for participants to assess a decision-making process, they must first be able to recognise when they have participated in one'. Furthermore, there has been little research published to assist clinicians and other healthcare professionals in their new roles as 'curators' of evidence and knowledge (Gulbrandsen, et al., 2016), as well as little research on the role of the surrounding environment in promoting or hindering a process of SDM (Joseph-Williams, et al., 2014). Specifically the environment has been identified as a potential barrier for older people (i.e. environments that emphasise the power dynamics i.e. unfamiliar setting, poor access, lack of privacy etc.), but little research has been conducted concerning this issue for other groups (i.e. young adults, those with particular characteristics or circumstances) (Park & Song, 2005). In addition, research is required on effective ways to deal with perceived barriers to SDM such as lack of time (Legare & Thompson-Leduc, 2014; Joseph-Williams, et al., 2014) and clinicians belief that they are already carrying out SDM (Legare & Thompson-Leduc, 2014; Moumjid, et al., 2007; Couet, et al., 2013).

Looking more closely at literature on SDM for different patient groups (i.e. by age or ethnicity) (Joseph-Williams, et al., 2014), a number of specific findings have been identified. Research has shown that older patients can hold the belief of 'the doctor knows' best more strongly than other groups, and their authority should not be questioned (Bastiaens, et al., 2007), making SDM with some older patients difficult. Younger people may lack the authority and self-belief to represent themselves appropriately (Fraenkel & McGraw, 2007).

Although factors such as age and ethnicity cannot be altered (Joseph-Williams, et al., 2014), more research could be carried out on how to alter the existing associated attitudes and prejudices that can make participation in SDM more difficult for particular groups.

There is some literature (Bhatt, et al., 2018) around the role of carers, advocates and patients within SDM (e.g. for patients with dementia), which has identified that a broad spectrum of SDM exists when interacting with patients with dementia. However, there are calls for more research on how to best promote SDM among people with dementia and carers (Miller, et al., 2016). Additionally, more research could be conducted on how to encourage greater involvement of young people in SDM (Fraenkel & McGraw, 2007).

Although much of the literature on SDM has come from wider geographic areas (e.g. UK and USA) there has been some literature produced in Scotland, and lessons can be learnt (with appropriate contextual caveats) from the wider geographic literature. Within Scotland the literature has predominantly emerged from policy and third-sector organisations promoting a focus on person-centred care, strategies for self-management and health literacy (see Section 2 for references). Academic literature in Scotland has mirrored this policy focus, with research on (dis)empowerment through self-management (Roberts, et al., 2015; Munoz, et al., 2014) and digital health technology (Dowd, et al., 2018; Currie, et al., 2015).

Much of this research has been conducted in rural areas (Munoz, 2013; Farmer, et al., 2011) where self-management of health conditions could have a bigger impact on the efficiency of health services, and promote the importance of community. Although there is a lack of academic research specific to Scotland, the overview in this section highlights findings from elsewhere that can be relevant to the Scottish perspective.

Overall, links between SDM and patient health outcomes need further exploration, via longer term and system level studies (Shay & Lafata, 2015; Légaré, et al., 2018).