POS0889 PATIENT RESEARCH PARTNER INVOLVEMENT IN RHEUMATOLOGY RESEARCH: A SYSTEMATIC LITERATURE REVIEW INFORMING THE 2023 UPDATED EULAR RECOMMENDATIONS FOR THE INVOLVEMENT OF PATIENT RESEARCH PARTNERS
Authors: K. Aouad, M. De Wit, M. Elhai, D. Benavent, H. Bertheussen, J. Primdahl, C. Zabalan, P. Studenic, L. Gossec
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. Their integration as equal partners is recommended [1]. However, PRP involvement still faces significant challenges that need to be addressed [2]. <h3>Objectives:</h3> The aim of this systematic literature review (SLR) was to assess PRPs' roles, identify barriers to their involvement, and propose strategies to improve PRP involvement. <h3>Methods:</h3> The SLR was conducted in PubMed/Medline, focusing on studies reporting PRP involvement in rheumatology research published between 2017 and January 2023. Websites were also searched in rheumatology and other specialties. Keywords such as "patient research partner," "patient expert," "patient and public involvement (PPI)", and relevant acronyms (PRP, PPI) were used. Data were extracted regarding the definition of PRPs, their role and added value, as well as barriers and facilitators to PRP involvement. The quality of the articles was assessed. Quantitative data were analyzed descriptively, and principles of thematic content analysis was applied to qualitative data. <h3>Results:</h3> Of 1016 publications, 53 articles were included; the majority of these studies were qualitative studies (26%), opinion articles (21%), meeting reports (17%) and mixed methods studies (11%). 60% of articles reported a definition of PRPs identifying terms such as "equal partnership", "active engagement", and "collaboration with researchers". Roles of PRPs ranged from research partners to patient advocates, advisors, and patient reviewers. PRPs were reported/advised to be involved early in the project (32% of articles) and in all research phases (30%), from the conception stage to the implementation of research findings. The main barriers were challenges in communication and support for both PRPs and researchers (Table 1). Facilitators of PRP involvement included more than one PRP per project, training of PRPs and researchers, a supportive environment for PRPs (including adequate communication, acknowledgement and compensation of PRPs), and the presence of a PRP coordinator (Table 1). <h3>Conclusion:</h3> This SLR identified barriers and facilitators to PRP involvement in rheumatology research. Addressing these barriers and implementing effective strategies is crucial for meaningful PRP involvement. This SLR was key to update the EULAR recommendations for PRP-researcher collaboration based on scientific evidence. <h3>REFERENCES:</h3> [1] de Wit MP, et al. European League Against Rheumatism recommendations for the inclusion of patient representatives in scientific projects. Ann Rheum Dis. 2011. [2] Studenic P et al. Unmet need for patient involvement in rheumatology registries and observational studies: a mixed methods study. RMD open. 2019. <h3>Acknowledgements:</h3> Funded by EULAR (RES005) <h3>Disclosure of Interests:</h3> <b>None declared.</b>