Patient and Public Involvement in health research: evidence on the practice of participant selection

Abstract

Abstract Background Research on Patient and Public Involvement (PPI) largely focusses on its aims and methods. Aspects regarding who participates in PPI are largely overlooked, though they may impact considerably on the planning, process and outcomes: who exactly are 'patients and public' in PPI? How are participants selected and why? Are and should participants be representative? Our objective was to explore respective practices and perceptions to inform future PPI. Methods We conducted a systematic database search to select published PPI in medical and health research. Authors of included publications (n = 315) were addressed via an electronic survey, closed and open responses were assessed using descriptive statistics and thematic content evaluation. Results Respondents (40%) reported to have recruited a broad spectrum of participants, often including more than one specific group (56%), e.g. publics with and without topic-wise experience. There were only little differences with respect to selecting participants for different involvement aims and using different recruiting methods. Representativeness was often seen as a crucial recruiting objective (71%), while many considered achieving it (very) difficult (69%). They identified significant respective challenges and desired more guidance on various aspects of planning and conducting PPI (56%). Conclusions Recruiting PPI participants and handling representativeness are controversial and are associated with various obstacles. While few prior studies addressed single related aspects using debates and theory, our results add a more comprehensive and empirical perspective, particularly regarding the (real) relevance of representativeness. Key messages Study authors need to be more systematic and reasonable in selecting PPI participants and in deciding about the need for representativeness. PPI-guidelines should concretize the most relevant steps for planning and conducting participant selection, so that the practice of PPI can be regarded sound and meaningful.