On Friday 21 March 2014, INVOLVE hosted an invoNET round table discussion: Taking stock of the evidence base for the impact of public involvement in research at the King’s Fund in London, bringing together researchers, service user researchers and service users with expertise in the impact of public involvement in research.
The discussion, chaired by Patricia Wilson, had two aims:
A paper summarising the main points of the discussion is also available to download.
Around the table
Rosemary Barber is an Honorary Senior Research Fellow at the University of Sheffield, School of Health and Related Research (ScHARR).
Evidence of the impact of public involvement has developed rapidly during the past five years, with compelling information about the perceived beneficial effects on research and on key stakeholders. Whilst there is now accumulating evidence, it is patchy with many researchers unaware of the value that members of the public could contribute to their research.
Read full reflection from Rosemary
Jonathan Boote co-leads a research theme on patient and public involvement (PPI) within ScHARR, University of Sheffield, where he is also the School’s PPI lead.
This session provided a very useful opportunity to take stock of the current state of the evidence base and to consider where research into the impact of public involvement may wish to go next. The key issue for me arising out of the session was that, although recent reviews of the evidence base have highlighted some of the key impacts that public involvement can have on research processes and outcomes.
Read full reflection from Jonathan
Andrew Gibson is a Research Fellow in Patient and Public Involvement with the NIHR CLAHRC for the South West Peninsula.
Patient and Public Involvement in research is still relatively new. How we understand its impact is one of the many debates taking place. Some people argue that involvement is a right that needs no justification. Whilst I have sympathy with this perspective I think that assessing impact can help us avoid adverse effects, maximise learning and help ensure that involvement is carried out with integrity.
Read full reflection from Andrew
Diana Rose is a social scientist and has been a mental health service user all her adult life.
We need much more theoretical and conceptual clarity around what we mean by involvement, engagement, and now, post-Francis, the patient experience. In my Academic Health Science Network (AHSN) some people are frustrated with research because they argue Francis has told us what’s wrong and we just need to get out there and fix it.
Read full reflection from Diana
Sophie Staniszewska leads the Patient and Public Involvement (PPI) and Experiences of Care Research Programme at the RCN Research Institute, Warwick Medical School, University of Warwick.
One of the key areas for me is around the capture and measurement of the impact of PPI. This often causes a lot of discussion and people have a wide range of views. I think our discussion reinforced the continued interest in qualitative capture and quantitative measurement and my view that it’s a bit like Marmite – you love it or you hate it.
Read full reflection from Sophie
Maryrose Tarpey is Assistant Director at the INVOLVE Coordinating Centre with the lead for policy and evidence.
We still face basic challenges to the way in which we approach the ‘what, why, how, when’ type questions that make it difficult to research and report the impacts of public involvement in – and on – research. The absence of recording and links to information on public involvement activities in different stages of a single research study was cited as an example of how difficult it is to assess or predict impact. .
Read full reflection from Maryrose
Kati Turner has worked as a service user researcher at the Population Health Research Institute at St George’s, University of London, since 2005.
I found this a very useful and enjoyable discussion and was pleased to be given the opportunity to contribute to the debate. A number of points stood out for me. The language we use to define involvement: in some areas ‘participation’, ‘engagement’ and ‘involvement’ are used interchangeably when they mean different things. This could have a negative effect on any future impact evaluation.
Read full reflection from Kati
Patricia Wilson has led a 10 year programme of health services research with a particular focus on patient experience and public involvement.
A very vibrant discussion on the current state of evidence on public involvement (PI) in research and where we need to go from here. The different perspectives were clear, which makes for interesting discussion but also reinforces the complexity of involvement.
The key points for me were how the landscape has changed over the past 10 years, for example the wide acceptance that PI is both doable and needed in trials.
Read full reflection from Patricia
You can download the round table summary paper here