Can patient and public involvement in research form a part of social prescribing?
23 July 2019
ESWG 4 PPI
Stephanie Tierney, Centre for Evidence Based Medicine, University of Oxford
Tony Meacock, PPI Contributor, University of Oxford
Social prescribing encompasses activities undertaken by patients to address ‘non-medical’ challenges (e.g. isolation, housing problems, bereavement) that can affect their well-being. It now plays a central role in primary care policy, forming a key component of the NHS Long Term Plan and its Comprehensive Model of Personalised Care.
The implementation of social prescribing in the NHS is being facilitated by the introduction of link workers into newly formed primary care networks. One of the link worker roles will be to assist patients in identifying what matters to them, in terms of their well-being, and support patients to locate ‘assets’ (e.g. organisations, groups, activities, events) in the local community to address their current, pressing social, emotional or practical needs. This represents a relatively new approach to operationalising social prescribing. But perhaps the sentiment behind social prescribing is occurring more commonly than we realise?
Many of us will recognise factors that affect our mental or physical well-being, and autonomously seek to address them through non-medical means. It could be as innocuous as tackling a stressful day by going for a walk, managing isolation by building new relationships through a community group, or increasing social contact via volunteering. In effect, we are engaging in social prescribing for ourselves, sometimes on a daily basis, by doing things that make us feel better and more connected (e.g. to others, to nature, to our emotions).
There is the potential for social prescribing activities within academic environments; some are occurring already yet have not been recognised in this manner. For example, encouraging people to come together and work collectively to shape a piece of research as part of patient and public involvement (PPI). PPI centres on doing research with or by patients and the public, rather than on or about them. It strives to bring the voice of end-users of healthcare services into decision-making about research direction, design, delivery and dissemination. Research has indicated that those engaged in PPI (PPI contributors) can, as a consequence, feel listened to and valued, as if they are giving back to society and engaged in something meaningful, thereby increasing their sense of self-worth and confidence.
For PPI to work in this way calls for an understanding of people’s information and support requirements and what they anticipate gaining from their involvement. Without such groundwork and consideration, PPI contributors may feel excluded by research jargon and sense that their role is tokenistic. When forming part of a research group, PPI contributors should feel they are entering a welcoming environment, where they are able to have their say and facilitated to make a contribution; this is important so they feel connected rather than further excluded.
The importance of relationship building as part of PPI has been noted. This should be a two-way process, whereby researchers are able to interact with people who might sit outside their usual social sphere. It allows for connection between individuals engaged in a common goal of making research feasible, acceptable and relevant. For researchers who often spend chunks of time occupied on a study in relative isolation, such contact with people living with a condition or providing care can give their work meaning. In this respect, engaging with PPI contributors can bring benefits to researchers related to the aims of social prescribing (e.g. feeling part of a community and a valued member of society).
Similarly, through being part of a research team PPI contributors can be exposed to new contacts and alternative perspectives on the world. However, individuals may need convincing that undertaking this role is something they can do. Testimonies from others who have been PPI contributors might give them an insight into what it entails. Link workers could also be a vehicle for the use of PPI as a potential means of addressing people’s ‘non-medical’ needs. This might require an insight into PPI, so that link workers believe it is appropriate and worthwhile referring patients to such an initiative. If link workers were made aware of the potential of PPI as part of social prescribing, it could have the additional benefit of ensuring that PPI groups move beyond the ‘usual suspects’ (e.g. white, middle class, retired) towards a more varied composition.
Seeing PPI as part of social prescribing represents a way of extending the contribution of universities to wider society. This calls for an assessment of impact for individuals (rather than simply considering how their involvement has shaped the research), whereby it can be demonstrated that being a PPI contributor offers those with emotional and/or social difficulties a place to shine. It would mean exploring (probably longitudinally) whether PPI helps people feel more connected and if taking part has given them a renewed focus in life. If this evidence was brought to the attention of link workers, they may then be encouraged to propose PPI activities as a social prescribing option.
Stephanie Tierney is a Researcher in Evidence Synthesis at the Centre for Evidence Based Medicine, Nuffield Department of Primary Care Health Sciences, University of Oxford and leads a programme of work on Social Prescribing. She is supported by the Evidence Synthesis Working Group of the National Institute for Health Research School for Primary Care Research (NIHR SPCR) [Project Number 390].
Tony Meacock is a member of the public who is actively contributing to the programme of research on social prescribing.
Disclaimer: The views expressed in this commentary are those of the authors and not necessarily those of the host institution, the NHS or the National Institute for Health Research.