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

Authors :
Robert Landewé
Kim Lauper
Theodora P M Vliet Vlieland
Uta Kiltz
Jette Primdahl
Ricardo J O Ferreira
Mwidimi Ndosi
Manouk de Hooge
Tue Wenzel Kragstrup
Souzi Makri
Luis Fernando Perez-Garcia
Elsa Frãzao-Mateus
Peter Boyd
Source :
RMD Open, Vol 10, Iss 2 (2024)
Publication Year :
2024
Publisher :
BMJ Publishing Group, 2024.

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.

Subjects

Subjects :
Medicine

Details

Language :
English
ISSN :
20565933
Volume :
10
Issue :
2
Database :
Directory of Open Access Journals
Journal :
RMD Open
Publication Type :
Academic Journal
Accession number :
edsdoj.b2e4a247b98f4ea18ed858e122a54da4
Document Type :
article
Full Text :
https://doi.org/10.1136/rmdopen-2024-004177