How embedded is public involvement in mainstream health research in England a decade after policy implementation? A realist evaluation

Objectives: To explore how embedded patient and public involvement (PPI) is within mainstream health research following two decades of policy-driven work to underpin health research with PPI in England.

Methods: Realist evaluation using Normalization Process Theory as a programme theory to understand what enabled PPI to be embedded as normal practice. Data was collected through a national scoping and survey, and qualitative methods to track PPI processes and impact over time within 22 nationally funded research projects.

Results: In research studies that were able to create reciprocal working relationships and to embed PPI this was contingent on: the purpose of PPI being clear; public contributors reflecting research end-beneficiaries; researchers understanding the value of PPI; PPI opportunities being provided throughout the research; and ongoing evaluation of PPI. Key contested areas included: whether to measure PPI impact; seeking public contributors to maintain a balance between being research-aware and an outsider standpoint seen as ‘authentically’ lay; scaling-up PPI embedded within a research infrastructure rather than risk token presence ; and whether PPI can have a place within basic science.

Conclusion: While PPI can be well-integrated within all types of research, policy makers should take account of tensions that must be navigated in balancing the moral and methodological imperatives.