Conceptualising and constructing ‘diversity’ through experiences of public and patient involvement in health research

Abstract

Plain English summary Supporting people from different backgrounds to access public and patient involvement (PPI) roles in health research is important. Increasing ‘diversity’ in PPI is often thought about in terms of the demographic characteristics (eg gender, ethnicity) of people undertaking PPI roles. However, we also need to understand how people experience PPI differently, and what shapes their ability to become and continue being involved. We conducted in-depth and follow-up interviews with five experienced PPI contributors, and a focus group with nine professionals working in roles around PPI in health research in the UK, to explore their views and experiences of the PPI field over time. Our findings show that how health research is organised impacts the motivation of people from different backgrounds to continue doing PPI, where processes for claiming expenses for PPI work can be particularly challenging for people on a low income and / or with additional needs. Relationships with PPI professionals are important for how valued different PPI contributors feel, but professionals’ expectations of PPI roles vary and some contributors feel their experience is not always welcomed. PPI coordinators can feel pressured by researchers to recruit new, ‘more diverse’ contributors to PPI roles, and they worry that this affects the relationships they have with people already doing PPI. Our research shows the need for more support within health research structures to enable people with different backgrounds and experiences to continue to feel valued and motivated in PPI. This will help ensure health research is informed by diverse perspectives.

Keywords

• Involvement
• Patient
• Public
• PPI
• Health research
• Qualitative