Building the future of patient-centred research: an EULAR PARE community of practice advancing patient research partner involvement in rheumatology
Year: 2026
Type: article
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.
Source: EULAR Rheumatology Open
Authors: Maarten de Wit, Martin Stevens, Krystel Aouad, Peter Boyd, Nele Caeyers, Loreto Carmona, Kristina Chingov, Diederik De Cock, Mrinalini Dey, Christopher J. Edwards, Muriel Elhai, Laure Gossec, Ingrid de Groot, Souzi Makri, Patricia Pennings, Jette Primdahl, Diana Rodrigues, Simon R. Stones, Paul Studenic, Bente Appel Esbensen
Institutions: University of Leeds, Saint George Hospital, European League Against Rheumatism, Instituto de Salud Musculoesquelética, Vrije Universiteit Brussel, King's College London, University Hospital Southampton NHS Foundation Trust, National Institute for Health and Care Research, University of Zurich, University Hospital Zurich, Inserm, Sorbonne Université, Assistance Publique – Hôpitaux de Paris, Pitié-Salpêtrière Hospital, Institut Pierre Louis d‘Épidémiologie et de Santé Publique, University of Southern Denmark, Sygehus Sønderjylland, University of Salford, Medical University of Vienna, University of Copenhagen, Copenhagen University Hospital, Rigshospitalet
Language: English
Subfield: General Health Professions
Field: Health Professions
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $2,080
OpenAlex ID: W7204274362