TY - JOUR
T1 - EULAR recommendations for the involvement of patient research partners in rheumatology research
T2 - 2023 update
AU - de Wit, Maarten
AU - Aouad, Krystel
AU - Elhai, Muriel
AU - Benavent, Diego
AU - Bertheussen, Heidi
AU - Blackburn, Steven
AU - Böhm, Peter
AU - Duarte, Catia
AU - Falahee, Marie
AU - Karlfeldt, Susanne
AU - Kiltz, Uta
AU - Mateus, Elsa F
AU - Richards, Dawn P
AU - Rodríguez-Carrio, Javier
AU - Sagen, Joachim
AU - Shumnalieva, Russka
AU - Stones, Simon R
AU - Tas, Sander W
AU - Tillett, William
AU - Vieira, Ana
AU - Wilhelmer, Tanita-Christina
AU - Zabalan, Condruta
AU - Primdahl, Jette
AU - Studenic, Paul
AU - Gossec, Laure
PY - 2024/10/21
Y1 - 2024/10/21
N2 - 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.
AB - 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.
KW - Arthritis
KW - Epidemiology
KW - Health services research
UR - http://www.scopus.com/inward/record.url?scp=85207599679&partnerID=8YFLogxK
U2 - 10.1136/ard-2024-225566
DO - 10.1136/ard-2024-225566
M3 - Article
C2 - 38876509
SN - 0003-4967
VL - 83
SP - 1443
EP - 1453
JO - Annals of the Rheumatic Diseases
JF - Annals of the Rheumatic Diseases
IS - 11
ER -