What do we mean by patient and public involvement in research?
by Vanessa Pinfold
Our charity is on a mission to improve the mental health of communities everywhere – through research. We obviously can’t do this alone, and thus collaborate with many others who share our goals. In the last three years, since we established our staffed research unit, we have seen some progress with the value and role of research being given greater prominence. We were really pleased that the Department of Health agreed to lead the development of a 10 year strategy for mental health research in response to the Mental Health Taskforce Report. This is happening at the moment. A Dementia Challenge styled effort for mental health research is our goal.
This week we are looking at patient and public involvement in research. This a term familiar to academics searching for research grants. They have to explain how the beneficiaries of their project have helped to develop the rationale behind it, the plan of how to deliver it, and how they will be disseminating any useful knowledge that needs to be shared at the end.
However, patient and public involvement in research, or PPI for short, is not embedded in the work of the mental health sector. When you dig down, researchers and others have different views on what it is, how to do it well, its value, and the challenges involved. PPI is one of the key areas that the McPin Foundation champions as a strategy for improving mental health research. So it is pretty important we know what we mean by the term. So in the summer we started talking to our staff and writing a guide to PPI to use within our induction programme. We thought it might be useful for others as well.
Today we publish our thinking so far. The focus has been on defining the terms we use and thinking about how we incorporate expertise from experience, both advising on research and doing research. We have chosen to produce some slides to outline where we have got to.
The process has not been as straight forward as I’d imagined but it’s been very important for the charity. Our staff have helped us develop our thinking and we’ve made decisions based upon their recommendations. Ultimately developing any shared set of language and principles that is practical and consistent involves compromise and some over-simplification. I’m keen that we continue to question and improve how we work and the language we use, and to be challenged and learn from others. So this is very much work in progress.
Our workshop this week, ‘integrating lived experience expertise into mental health research teams’, will continue our learning. This event, the first in a series, brings together people interested in PPI in research to look at how the sector can develop this approach and methods; it provides an opportunity to reflect on current models and share learning with each other.
Stepping back to language and definitions again, a universally accepted set of definitions for key terms used to describe PPI in research has yet to emerge. This linguistic diversity is healthy. It makes visible the methodological debates that are necessary to improve how we work. However, inconsistency of language makes day to day operation as an organisation and collaborating with others difficult. As with any team we need a common language. So over the past few months we’ve talked to people about job titles – how to integrate rather than creating us and them distinctions in teams through labelling. We have also thought hard about the disclosure process – how and when to use lived experience expertise in research, the decisions researchers need to make about what and how to disclose their personal experiences, and the risks of doing so. We’ve summarised our conclusions in this slide pack.
We have made these public as we thought they might be useful for others. We hope it will help us develop further as feedback is received, and it’s important for transparency.
The McPin Foundation is keen to support the development of PPI in research. Please help us to do so.