Aouad, Krystel

Benavent, Diego

Bertheussen, Heidi

Blackburn, Steven

Bőhm, Peter

de Wit, Maarten

Duarte, Catia

Elhai, Muriel

Falahee, M

Gossec, Laure

Karlfeldt, Suzanne

Kiltz, Uta

Mateus, Elsa

Primdahl, Jette

Richards, Dawn

Rodríguez-Carrio, Javier

Sagen, Joachim

Shumnalieva, Russka

Stones, Simon

Studenic, Paul

Tas, Sander

Tillett, William

Viera, Ana

Wilhelmer, Tanita Christina

Zabalan, Codruta

Background: Since the publication of the 2011 European Alliance of Associations for Rheumatology (EULAR) recommendations for patient research partner (PRP) involvement in rheumatology research, the role of PRPs has evolved considerably. Therefore, an update of the 2011 recommendations was deemed necessary.Methods: In accordance with the EULAR Standardised Operational Procedures, a task force comprising 13 researchers, 2 health professionals and 10 PRPs was convened. The process included an online task force meeting, a systematic literature review and an in-person second task force meeting to formulate overarching principles (OAPs) and recommendations. The level of agreement of task force members was assessed anonymously (0–10 scale).Results: The task force developed five new OAPs, updated seven existing recommendations and formulated three new recommendations. The OAPs address the definition of a PRP, the contribution of PRPs, the role of informal caregivers, the added value of PRPs and the importance of trust and communication in collaborative research efforts. The recommendations address the research type and phases of PRP involvement, the recommended number of PRPs per project, the support necessary for PRPs, training of PRPs and acknowledgement of PRP contributions. New recommendations concern the benefits of support and guidance for researchers, the need for regular evaluation of the patient–researcher collaboration and the role of a designated coordinator to facilitate collaboration. Agreements within the task force were high and ranged between 9.16 and 9.96.Conclusion: The updated EULAR recommendations for PRP involvement are more substantially based on evidence. Together with added OAPs, they should serve as a guide for researchers and PRPs and will ultimately strengthen the involvement of PRPs in rheumatology research

Falahee, Marie

Richards, Dawn P.

Tas, Sander W

University of Birmingham Research Portal

EULAR recommendations for the involvement of patient research partners in rheumatology research:2023 update

EULAR recommendations for the involvement of patient research partners in rheumatology research:2023 update

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University of Birmingham Research Portal