Distinguishing participants, patients and the public: implications of different institutional settings on engagement approaches

Background: There is an established history of patient and public involvement and engagement (PPIE) in academic and clinical research. As the National Institute for Health and Care Research (NIHR) expands its investment in research on and by local authorities (LAs), NIHR PPIE frameworks are increasingly being applied in this new context. This article examines if and how the relationship between the public varies across universities, the NHS and LA and what this means for PPIE.

Methods: To analyse differences in institutional structures, we reviewed organisational websites, comparing the purpose and responsibilities of the institution, funding sources, governance structures, ability to directly action research findings, the role of public collaborators and duration of this relationship. We then systematically analysed these differences against the six UK Standards for Public Involvement: inclusive opportunities, working together, support and learning, governance, communications and impact. We also held a group discussion with nine PPIE Research Advisory Panel members to sense check if and how they perceived differences across these three institutional contexts and to refine and identify additional hypotheses about what might need to be adapted for PPIE in a LA setting.

Results: The three institutions generally fall along a continuum, with universities having the most bounded relationship with the public and LAs the most expansive and enduring. The NHS and LAs have statutory responsibilities to the public, who finance their services and whose rights are articulated in institutional constitutions. Reflective of the service delivery responsibilities of both institutions, they are able to directly implement research findings, whereas university research outputs predominantly aim to inform others’ service design and delivery. Given these differences, our analysis suggests that the three standards on working together, governance and PPIE impact may require greater adaptation in LA settings. At the heart of the challenge is role clarification, since public contributors to research may also be council tenants, taxpayers and voters.

Conclusions: PPIE in LA research offers new opportunities and challenges, requiring tailored guidance that accounts for the unique relationship between LAs and the public. We encourage PPIE contributors, coordinators and scholars across institutional settings to work together to fill this gap.