Recruitment of patients, carers and members of the public to advisory boards, groups and panels in public and patient involved health research: a scoping review.

OBJECTIVES: The objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias. DESIGN: A scoping review. SETTING: This scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria. PRIMARY AND SECONDARY OUTCOME MEASURES: Explore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias. RESULTS: The final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias. CONCLUSION: We conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.

Exploring how patients, carers and members of the public are recruited to advisory boards, groups and panels as partners in public and patient involved health research: a scoping review protocol.

INTRODUCTION: Engaging patients, carers and members of the public in health research has become widely recognised as an important approach for bridging the gap between research, and health and social care by increasing the relevance of research for those who benefit from its findings. Specific approaches to engagement vary, but commonly include advisory boards, groups or patient panels that are active throughout all stages of research. The breadth of and optimal strategies for recruiting patients, carers and members of the public to such boards, groups or panels remains unclear. The objective of this manuscript is to identify the breadth of and optimal strategies used to recruit patients, carers and members of the public to advisory boards, groups or panels, within public and patient involvement (PPI) research. METHODS AND ANALYSIS: This review follows the scoping review framework by Peters et al, an elaboration on the framework by Arksey and O'Malley. The search strategy was co-developed among the research team, PPI research experts and a faculty librarian. The review will take place between July 2021 and June 2022. In July and August 2021, eight electronic databases, MEDLINE (PubMed), MEDLINE (OVID), Embase, CINAHL, PsychINFO, Scopus, Web of Science and Cochrane Library, will be explored to capture all available literature. Two independent reviewers will screen articles by title and abstract and then at full text based on predetermined criteria. The data will be presented in a tabular format with a narrative summary discussing how the research findings relate to the overarching research question. A thematic analysis will also be completed using qualitative description, identifying key themes and gaps in the literature. ETHICS AND DISSEMINATION: Ethics is not required for this review. We aim to disseminate the information gathered through presentations at academic conferences, peer-reviewed publications and consultations with lay audiences.