Patient and Public Involvement in Health Research as Essentially Contested Concept? A Scoping Review

Patient and Public Involvement (PPI) emphasizes conducting research with or by patients and members of the public rather than to, about, or for them. As a cornerstone of ethical and impactful research, funders increasingly mandate PPI. Despite its recognized importance, it remains difficult to attain meaningful engagement with patients and the public. Moreover, the field shows a large variety of definitions and approaches. This study reviews the terminology and conceptual frameworks surrounding PPI in health research. We conduct a scoping review following Arksey and O'Malley's framework and PRISMA-ScR guidelines, systematically searching two databases using eligibility criteria based on the Population-Concept-Context approach. We identify developments and inconsistencies in definitions and applications of PPI, and examine whether PPI can be labelled as Essentially Contested Concept, due to its inherent complexity and multiple definitions. We propose to approach PPI as a cluster concept, including PPI terminology; Participants’ perspectives and roles; and Researchers’ perspectives and roles, within the context of health research. Such cluster concept can foster more meaningful involvement and strengthen strategic integration of PPI in health research. This paper has been co-designed and co-authored by a patient advocate with extensive experience in health research.