The patient voice in ‘shared decision making’ in clinical practice and research

Shared decision making (SDM) in medical consultations has been defined as follows:

an approach where doctors and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve informed preferences

(Elwyn et al.1).

Elwyn's model of SDM describes the process, within the consultation, by which a patient moves from initial preferences to informed preferences through three stages. These three stages are the following: talk that there is a choice, talk about the options and talk about the patient's preferences and coming to a decision.

This edition of Health Expectations includes a number of manuscripts where SDM is the focus. Barr and Elwyn, in their viewpoint article, investigate the development of existing patient‐reported measures (PRMs) of SDM identified in a recent review and suggest that patients were involved in the development of only four of the 13 measures. Barr and Elwyn propose cognitive interviewing as a recommended method of involving patients in the design of PRMs in the field of SDM and suggest the use of CollaboRATE, a three‐item measure of SDM processes which attempts to capture both implicit and explicit decision making over an entire consultation.2

The conceptual review provided by Morant et al. focuses on decision making for the prescribing of psychiatric medication. The authors argue that several aspects of mental health care differ from other health‐care contexts (e.g. forms of coercion, questions about service users’ insight and disempowerment) which may impact on processes and possibilities for SDM. They suggest that it is problematic to uncritically import models of SDM developed in other health‐care contexts and demonstrate the importance of multilevel factors shaping medication decisions that they suggest existing SDM models ignore. So, they describe the importance of factors such as service users being provided with, or autonomously seeking out information on medication, or being supported to do so by individuals and social networks within and beyond the mental health system; acquiring confidence to voice their medication experiences and preferences, and potentially disagree with prescribers; and collaborative co‐investigations of medication options between a service user and one or more practitioners.

Coleywright et al. use qualitative methods to explore patient‐defined treatment goals for aortic stenosis. They suggest that clinicians should encourage patients to define their goals, which would lead to a greater degree of shared decision making. The importance of clinical communication within consultations is the subject of Nelson's mixed methods study, which concludes that patients expect their primary care clinicians will provide information about cardiovascular risk reduction and support their lifestyle/behaviour change. Such information is vital to support SDM in consultations, but also would take account of the broader social context as advocated in Morant's paper, and Morris's longitudinal study highlights fluidity of the social networks of people with long‐term conditions. Whilst clinicians need to consider the social network of the individual patient, policies and disease education programmes also need to be tailored, as individuals need different types of support at different times of their disease trajectory.

Shepherd et al. describe their patient–clinician communication model and suggest that enabling patients to view a short video clip before an appointment to improve information and involvement in health‐care consultations is feasible and led to a high uptake of question‐asking in consultations in a sexual health clinic.

Increasingly, the patient voice is seen in research, as integral members of the research team. Hyde et al.3 published earlier this year in HEX, a paper describing the role of patients in a systematic review. In this edition, Thompson Coon et al. report end‐user involvement in a systematic review, and both emphasize the value of PPIE (patient and public involvement and engagement) but also stress the need for adequate resources to allow appropriate allocation of time and resources for meaningful engagement. Garfield et al.4 highlight the benefits and challenges of lay involvement in a research team focusing on qualitative data analysis. Jinks et al.5 stress that the research team's institution must support a sustainable environment which allows the patient voice to be heard in all aspects of research.

The Editorial team at Health Expectations wish to encourage authors to report the impact of PPIE in their research, highlighting what lay people have contributed at all stages of their work (design of studies, data collection, data analysis and dissemination), and describe the challenges encountered and lessons learned.