Integrating the patient perspective into research projects

We, the team at the Clinic for Rheumatology, would like to integrate the needs and perspectives of those affected more closely into our research projects. Patients and / or those affected should become our research partners.

Research partners can be equal members of the project team and do not just serve as data providers. We train them in research methodology, support them and, depending on the project and tasks, compensate them financially. Research partners can also take on the role of experts: They can better inform other patients about the respective research project, the research methods and their disease.

Who can be considered as research partners?

• People with the following rheumatological diseases: rheumatoid arthritis, psoriatic arthritis, spondyloarthritis, systemic sclerosis, Sjogren’s syndrome, vasculitis, osteochondrosis intervertebralis modic type, complex regional pain syndrome (CRPS)
• Caregivers of patients, for example family members
• Representatives of patient organizations for the above-mentioned diseases

What interests and knowledge characterize research partners?

• You are interested in research
• Ideally you have a good command of English
• You are digitally savvy

What tasks do they perform?

They can be effectively involved from the beginning of a study, the planning phase through to the final phase.

Further information on the tasks of research partners can be found on our Patient and Public Involvement page.

How much time does it take?

• Training on research methodology (online or in person)
• At least once a year: meeting of all research partners (virtual or in person)
• At least once a year: participation in the open day for patients
• Individual exchange depending on the research project and tasks

Selected publications

1. Kristina Bürki, Melpomeni Toitou, Maarten de Wit, Stacey Grealis, Silke Ludwig, Chantal Britt, Florian Klett, Isabelle Steeb, Tanja Maletic, Andreas Eisenring, Penelope Timpert-Argust, Dania Diem, Raphael Micheroli, Stefan Dudli, Cosimo Bruni, Eva Camarillo-Retamosa, Rucsandra Dobrota, Anna-Maria Hoffmann-Vold, Adrian Ciurea, Caroline Ospelt, Oliver Distler, Muriel Elhai. How to build a framework to establish a Patient Research Partner network in rheumatology research-A report of a two-year implementation project. RMD Open 2025- In press
2. Elhai M, Benavent D, Aouad K, Studenic P, Bertheussen H, Primdahl J, Zabalan C, de Wit M, Gossec L. Involving patients as research partners in research in rheumatology: a literature review in 2023. RMD Open. 2023 Nov 23;9(4):e003566.
3. de Wit M, Aouad K, Elhai M, Benavent D, Bertheussen H, Blackburn S, Böhm P, Duarte C, Falahee M, Karlfeldt S, Kiltz U, Mateus EF, Richards DP, Rodríguez-Carrio J, Sagen J, Shumnalieva R, Stones SR, Tas SW, Tillett W, Vieira A, Wilhelmer TC, Zabalan C, Primdahl J, Studenic P, Gossec L. EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update. Ann Rheum Dis. 2024 Oct 21;83(11):1443-1453.