Multistakeholder implementation study reveals practical solutions for patient research partner involvement in rheumatology, highlighting high engagement across European networks.
Key Points
To identify barriers to patient research partner involvement in rheumatology and codevelop practical, implementation-focused solutions through a community of practice.
The 2024 EULAR PARE conference utilized a World Café format to evaluate stakeholder experiences and identify barriers to collaborative research across European networks.
The 2025 conference convened four multistakeholder Hackathon workshops to codevelop implementation solutions.
Participant engagement during the 2025 Hackathon was quantitatively evaluated using the 22-item Patient Engagement In Research Scale (PEIRS-22).
The 2024 conference identified four primary challenges: unclear patient research partner roles, regional variation in uptake across Europe, limited researcher training, and lack of systematic impact feedback.
The 2025 Hackathons generated five actionable frameworks, including a partner toolkit, ambassador and coordinator profiles, a collaboration hub, a researcher training curriculum, and an evaluation framework.
Among 54 respondents (46% response rate), the mean PEIRS-22 score was 88, indicating high and meaningful stakeholder engagement.