Introduction: Increasing evidence indicates the benefits of patient and public involvement (PPI) in medical research, and PPI is increasingly expected by funders and publishers. We conducted a mapping review of studies reporting examples of PPI implementation in HIV research, and developed an online evidence map to guide researchers in the planning of PPI in HIV research projects.
Methods: We systematically searched Medline and Embase up until March 16, 2023, including search terms with variations for PPI and HIV. We extracted information from identified studies in duplicate and analysed the data descriptively and qualitatively to describe types of PPI models and report benefits, challenges, and mitigation strategies. This study was co-initiated and co-led by people living with HIV. PPI was embedded into all parts of the research process, and we report and reflect on our own PPI experience in this study.
Results: We identified twelve studies reporting PPI in HIV research between 1992 and 2020. Most PPI examples informed clinical trials, but also qualitative research, questionnaire development, research priority setting and surveys. Only six studies described the number and characteristics of PPI members involved. We observed four PPI models, from a model that solely engaged PPI members for a specific task to a model whereby PPI representatives were integrated into the study team with decision-making authority. Benefits reported included wider dissemination of research results, better understanding of research material and results, and higher levels of trust and learning between researcher and communities. Most reported challenges were lack of specific resources for PPI, levels of knowledge and expertise, risk of disclosure, and diversity of the PPI team. We embedded PPI from study inception onwards, which probably pre-empted some of the challenges reported in the reviewed examples.
Conclusions: This mapping review summarizes published examples of PPI in HIV research for various phases of research. There is clear need to strengthen the reporting on PPI processes in HIV research, e.g., by following the GRIPP2 guidelines, and to develop guidance on its hands-on implementation. The resulting online evidence map is a starting point to guide researchers on how to integrate PPI in their own research.