Building the future of patient-centred research: an EULAR PARE community of practice advancing patient research partner involvement in rheumatology

Objectives The European Alliance of Associations for Rheumatology (EULAR) supports patient involvement in research through its People with Arthritis and Rheumatism in Europe (PARE) network. Updated 2023 recommendations promote inclusion of Patient Research Partners (PRPs) in research; however, implementation remains inconsistent. Key challenges include unclear PRP roles, limited researcher preparedness, insufficient support, and a lack of systematic feedback on impact. We describe how the EULAR PARE community of practice used cocreation to develop practical, implementation-focused solutions. Methods The 2024 EULAR PARE conference used a World Café format to explore stakeholder experiences and identify barriers to collaborative research. Building on these findings, the 2025 conference centred on 4 multistakeholder Hackathon workshops to codevelop solutions. Participant experience in 2025 was evaluated using the Patient Engagement In Research Scale (PEIRS-22). Results The 2024 conference identified 4 priority challenges: unclear PRP roles, variation in uptake across Europe, limited researcher training, and uncertainty about PRP impact due to insufficient feedback. In 2025, Hackathons generated actionable outputs, including concepts for a PRP toolkit and role descriptions, profiles for national PRP coordinators and ambassadors, a Supporting Patient Research Collaboration hub, a draft researcher training course, and a framework for evaluating PRP involvement. Fifty-four participants (46% response rate) completed PEIRS-22; the mean score was 88, indicating high, meaningful engagement. Conclusions From 2024 to 2025, the EULAR PARE community identified key challenges and translated them through Hackathon workshops into feasible solutions to strengthen collaborative research. The ongoing next steps will be to refine, pilot, and scale these solutions across Europe.

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Journal
EULAR Rheumatology Open
Published
2026-08-26
DOI
https://doi.org/10.1016/j.ero.2026.100220
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
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article

Building the future of patient-centred research: an EULAR PARE community of practice advancing patient research partner involvement in rheumatology

Loreto Carmona, Diederik De Cock, Souzi Makri, Paul Studenic et al.
EULAR Rheumatology Open
Mental Health and Patient Involvement
article

Building the future of patient-centred research: an EULAR PARE community of practice advancing patient research partner involvement in rheumatology

Loreto Carmona, Diederik De Cock, Souzi Makri, Paul Studenic, Bente Appel Esbensen, N. Caeyers, Maarten P. T. de Wit, Jette Primdahl, Simon Stones, Martin Stevens, Mrinalini Dey, Krystel Aouad, Muriel Elhaï, Christopher J Edwards, Patricia Pennings, Laure Gossec, Peter Boyd, Ingrid de Groot, Kristina Chingov, Diana Rodrigues
article en

Abstract

Objectives The European Alliance of Associations for Rheumatology (EULAR) supports patient involvement in research through its People with Arthritis and Rheumatism in Europe (PARE) network. Updated 2023 recommendations promote inclusion of Patient Research Partners (PRPs) in research; however, implementation remains inconsistent. Key challenges include unclear PRP roles, limited researcher preparedness, insufficient support, and a lack of systematic feedback on impact. We describe how the EULAR PARE community of practice used cocreation to develop practical, implementation-focused solutions. Methods The 2024 EULAR PARE conference used a World Café format to explore stakeholder experiences and identify barriers to collaborative research. Building on these findings, the 2025 conference centred on 4 multistakeholder Hackathon workshops to codevelop solutions. Participant experience in 2025 was evaluated using the Patient Engagement In Research Scale (PEIRS-22). Results The 2024 conference identified 4 priority challenges: unclear PRP roles, variation in uptake across Europe, limited researcher training, and uncertainty about PRP impact due to insufficient feedback. In 2025, Hackathons generated actionable outputs, including concepts for a PRP toolkit and role descriptions, profiles for national PRP coordinators and ambassadors, a Supporting Patient Research Collaboration hub, a draft researcher training course, and a framework for evaluating PRP involvement. Fifty-four participants (46% response rate) completed PEIRS-22; the mean score was 88, indicating high, meaningful engagement. Conclusions From 2024 to 2025, the EULAR PARE community identified key challenges and translated them through Hackathon workshops into feasible solutions to strengthen collaborative research. The ongoing next steps will be to refine, pilot, and scale these solutions across Europe.

EULAR Rheumatology OpenVol. 2(3)
University of Copenhagen (DK), University of Leeds (GB), Vrije Universiteit Brussel (BE), Inserm (FR), University of Southern Denmark (DK), King's College London (GB), University of Zurich (CH), Copenhagen University Hospital (DK), Macclesfield College (GB), Saint George Hospital (LB), Sorbonne Université (FR), Parnassia Groep (NL), St Mary's Hospital (GB), Assistance Publique – Hôpitaux de Paris (FR), University Hospital of Zurich (CH), Molecular Medicine Ireland (IE), NIHR Southampton Respiratory Biomedical Research Unit (GB), NIHR Leeds Musculoskeletal Biomedical Research Unit (GB), NIHR Southampton Biomedical Research Centre (GB), Pitié-Salpêtrière Hospital (FR), Research Centre Rez (CZ), Institut Pierre Louis d‘Épidémiologie et de Santé Publique (FR), European League Against Rheumatism (CH), Instituto de Salud Musculoesquelética (ES), University of Salford (GB), Medical University of Vienna (AT), National Patient Safety Foundation (US)
European League Against Rheumatism
Reduced inequalities
Openalex Percentile: Top 6%
Mental Health and Patient Involvement
DOIOpen Access PDFOpenAlex
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