Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

Krystel Aouad; Maarten de Wit; Muriel Elhai; Diego Benavent; Heidi Bertheussen; Condruta Zabalan; Jette Primdahl; Paul Studenic; Laure Gossec

doi:10.1136/ard-2024-225567

Patient research partner involvement in rheumatology research: a systematic literature review informing the 2023 updated EULAR recommendations for the involvement of patient research partners

Ann Rheum Dis. 2024 May 8:ard-2024-225567. doi: 10.1136/ard-2024-225567. Online ahead of print.

Authors

Krystel Aouad¹, Maarten de Wit², Muriel Elhai³, Diego Benavent⁴, Heidi Bertheussen⁵, Condruta Zabalan⁶, Jette Primdahl⁷, Paul Studenic^{8

9}, Laure Gossec^{10

11}

Affiliations

¹ Rheumatology Division, Saint George University of Beirut, Saint George Hospital University Medical Center, Beirut, Lebanon krystel.aouad@hotmail.com.
² EULAR Study Group for collaborative research, Patient Research Partner, Amsterdam, The Netherlands.
³ Rheumatology Department, University of Zurich, University Hospital Zurich, Zurich, Switzerland.
⁴ Rheumatology Department, Hospital Universitari de Bellvitge, Barcelona, Spain.
⁵ Patient Research Partner, Oslo, Norway.
⁶ Patient Research Partner, Bucharest, Romania.
⁷ Danish Hospital for Rheumatic Diseases, University Hospital of Southern Denmark, Sønderborg, Denmark.
⁸ Rheumatology Division, Department of Medicine(Solna), Karolinska Institutet, Stockholm, Sweden.
⁹ Rheumatology Division, Internal Medicine Department, Medical University of Vienna, Vienna, Austria.
¹⁰ Rheumatology Department, University Hospital Pitié Salpêtrière, Paris, France.
¹¹ INSERM, Institut Pierre Louis d'Epidémiologie et de Santé Publique, Sorbonne Université, Paris, France.

PMID: 38724076
DOI: 10.1136/ard-2024-225567

Abstract

Background: Patient research partners (PRPs) are people with a disease who collaborate in a research team as partners. The aim of this systematic literature review (SLR) was to assess barriers and facilitators to PRP involvement in rheumatology research.

Methods: The SLR was conducted in PubMed/Medline for articles on PRP involvement in rheumatology research, published between 2017 and 2023; websites were also searched in rheumatology and other specialties. 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 analysed descriptively, and principles of thematic content analysis was applied to qualitative data.

Results: 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%). 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. 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.

Conclusion: This SLR identified barriers and facilitators to PRP involvement, and was key to updating the European Alliance of Associations for Rheumatology recommendations for PRP-researcher collaboration based on scientific evidence.

Keywords: Health services research; Health-Related Quality Of Life; Outcome and Process Assessment, Health Care; Quality Indicators, Health Care.

© European Alliance of Associations for Rheumatology, EULAR 2024. Re-use permitted under CC BY-NC-ND. No commercial re-use. No derivatives. See rights and permissions. Published by BMJ on behalf of EULAR.