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

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

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.

• Journal Article Type: Article
• Acceptance Date: Apr 23, 2024
• Online Publication Date: Jun 12, 2024
• Publication Date: Jun 12, 2024
• Deposit Date: Jun 17, 2024
• Publicly Available Date: Jun 18, 2024
• Journal: RMD Open
• Electronic ISSN: 2056-5933
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Volume: 10
• Issue: 2
• Article Number: e004177
• DOI: https://doi.org/10.1136/rmdopen-2024-004177
• Keywords: Qualitative Research, Health Services Research, Patient Care Team, Humans, Rheumatology, Adult, Middle Aged, Health Personnel, Advisory Committees, Europe, Female, Male, Surveys and Questionnaires
• Public URL: https://uwe-repository.worktribe.com/output/12056161
• PMID: 38866591