Evaluating the participation of junior members and patient and healthcare professionals representatives in EULAR task forces: Results from an international survey

Pierre Antoine Juge, Tue Wenzel Kragstrup, Luis Fernando Perez-Garcia, Elsa Frãzao-Mateus, Souzi Makri, Peter Boyd, Jette Primdahl, Ricardo J.O. Ferreira, Theodora P.M. Vliet Vlieland, Mwidimi Ndosi, Uta Kiltz, Robert Landewé, Kim Lauper, Manouk De Hooge*

*Corresponding author for this work

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Abstract

Objective European Alliance of Associations for Rheumatology (EULAR) task forces (TF) requires participation of ≥2 junior members, a health professional in rheumatology (HPR) and two patient research partners for the development of recommendations or points to consider. In this study, participation of these junior and representative members was compared with the one of traditional TF members (convenor, methodologist, fellow and expert TF members). Methods An online survey was developed and emailed to previous EULAR TF members. The survey comprised multiple-choice, open-ended and 0-100 rating scale (fully disagree to fully agree) questions. Results In total, 77 responded, 48 (62%) women. In total, 46 (60%) had participated as a junior or representative TF member. Most junior/representative members reported they felt unprepared for their first TF (10/14, 71%). Compared with traditional members, junior/representative members expressed a significantly higher level of uncertainty about their roles within the TF (median score 23 (IQR 7.0-52.0) vs 7 (IQR 0.0-21.0)), and junior/representative members felt less engaged by the convenor (54% vs 71%). Primary factors that facilitated interaction within a TF were experience, expertise and preparation (54%), a supportive atmosphere (42%) and a clear role (12%). Conclusion Juniors, patients and HPR experience various challenges when participating in a EULAR TF. These challenges differ from and are generally less pronounced than those experienced by traditional TF members. The convenor should introduce the participants to the tasks, emphasise the value of their contributions and how to prepare accordingly for the TF meeting.

Original languageEnglish
Article numbere004177
JournalRMD Open
Volume10
Issue number2
DOIs
Publication statusPublished - Apr 2024

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