Being a PPI representative: what is it like?

Abstract

I have a personal and professional background in healthcare and when I retired, I wanted to find activities to keep me engaged. I was told about a Patient and Public Involvement group at the University of Nottingham and joined in 2013. Since then, I have been involved in supporting a number of studies, but in 2015 a professor asked for someone to take on a co-applicant role on a new study exploring the management of medicines for those seriously ill and dying at home. This commentary sets out the ways in which I have been involved and how this experience has been for me.

Since taking on this role I have worked as part of the study team, alongside academics and clinicians to develop the study protocol, gain ethical approval, support data collection and help write the final report. Some of the key challenges for me have been to be involved in data analysis and report my interpretations to the rest of the research team, to help organise and deliver engagement events and to speak up for the ‘patient and public’ in team discussions. While initial set up for payment of my role was a particular area of complexity, I have enjoyed being involved in a research study as a co-applicant and I am keen to encourage other PPI representatives and researcher teams to undertake this kind of engagement in the future.