Researching with purpose: what is the point of public involvement?

On Wednesday, 5th April Alcohol Research UK will be hosting a national conference on public involvement in alcohol research.  Here our new Senior Research and Policy Officer, Jo Cairns, describes her journey from conventional academic researcher to someone with a passion for working with the public.

Since finishing my PhD in 2012, I have for the most part enjoyed doing research and have worked on a variety of projects seeking to better understand and prevent health inequalities, from systematic reviews to statistical analyses.  I have often craved interaction with real people rather than numbers in a spreadsheet, but it is only recently that I have become committed to public involvement in research.

My transition came after volunteering with The Fells, a site of Changing Lives (a national organisation working with people experiencing homelessness and addiction).  My job as Client Engagement Facilitator involved training clients to become researchers in their own right – rather than doing the research myself.

Throughout my PhD, I developed a strong awareness of the importance of working with people to enhance research – after all, it’s individuals and communities who are experiencing the issues we are trying to change so it makes perfect sense that we use their invaluable experiential knowledge not only as data but also to inform the research we are doing. This can be challenging, especially when academics are often perceived to be the ‘experts’ by the very people who are in fact the experts of their own experience but who may not recognise their experience as valuable.

Source: Healthcare Governance Review

Informing research, however, is not the only component of public involvement; it’s much more than this. The National Institute of Health Research’s INVOLVE defines public involvement as ‘research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’.

INVOLVE defines ‘public’ in its broadest sense: it could be people with lived experience, patients (or potential patients), carers, people who use health and social care services, people who represent people who use services, advocates, the general public and so forth, depending on the research we are conducting.

Public involvement means not just informing and consulting, but involvement, collaboration, and empowerment. Research carried out with members of the public can certainly achieve the first four of these; but, as Nadine Muller has argued, if research is also done by the public, then it can also be extremely empowering.

Source: Nadine Muller’s Blog

I was so happy to hear from the team at the University of Bedfordshire led by Sarah Wadd at a recent Society for the Study of Addiction conference in York. Maureen Dutton, a PEER (Public and Expert by Experience Researcher), delivered a really inspiring and motivating presentation about her experiences of becoming a PEER, including the advantages for both herself and for the University as well as some of the challenges.  Sarah and I will be running a PEER research break-out session at Alcohol Research UK’s upcoming Annual Conference on 5th April 2017, the theme of the conference is public involvement in research.

As all researchers know, our work involves not just knowledge but power and ethics. We are taught to reflect on this, especially when carrying out qualitative research (and particularly when working with disadvantaged groups).  It often stops there – but once you have recognised unequal power relations, why not try to level the playing field? Ideally, research should involve those with lived experience from conception to completion since they are the intended beneficiaries of the research. Academics then may be the facilitators of research rather than the leaders.

Of course, this may be easier said than done, and everyone has to consider what is practical.  However, to move beyond tokenism we need to look at not just engaging the public, or asking them to become participants but going a step further and actively involving the public in research design, delivery and dissemination.

There are many practical benefits of public involvement. For instance, Ennis & Wykes showed that patient involvement in mental health research is associated with study success. Involving those experiencing a condition not only makes for more motivated research, but more effective research too. Public involvement can also enhance the relevance of research: making it more applicable by addressing the public concerns that are most important.

For me, though, it is first and foremost about doing what is ethical: considering the importance of linking the development of interventions to the experiences of the intended beneficiaries. Of course, systematic reviews will gauge the potential effectiveness of interventions, but in the end it comes down to whether or not they work at an individual level and this is the point at which public involvement could improve the quality of research.

The ‘hierarchy of evidence’ matters, undoubtedly, but we need to explore how the barriers between traditionally high-level evidence and the anecdotal (or, rather, lived experience) can be crossed.  Can RCTs and systematic reviews be co-produced, for instance? We can no longer ignore what Gibson and colleagues call ‘the existence of other relevant forms of knowledge and expertise’ (an idea echoed in the recent paper by Green and colleagues). It’s a two-way stream: a co-production of knowledge.

To quote Dame Sally Davies, Chief Medical Officer for England, “public involvement in research should be the rule not the exception”. This is a principle that I am convinced of, and that we will be exploring (with some fantastic examples from around the country) at our Annual Conference.