Patient Involvement

From the very beginning, patients have played a central role in shaping our work. Nine Patient Research Partners (PRPs) joined the project through an open call launched by EULAR. They come from the EULAR-PARE PRP network, PARE member organisations, and consortium partners. Together, they represent different countries and bring lived experience of rheumatoid arthritis — ensuring that both personal and local perspectives are always part of the conversation. Some PRPs are also active in sister projects (SQUEEZE and STRATA-FIT), helping to strengthen a unified voice for the RA community.

To get started, we held dedicated meetings to clarify roles, responsibilities, and ways of working together. As part of onboarding, the Principal Investigator introduced the project in simple, accessible terms, giving PRPs a clear picture of the goals, partners, and expected impact.

How We Support Meaningful Involvement

To make sure PRPs can contribute effectively, we designed a tailored support process:

• Clear information: Work package leaders explained expectations, time commitments, and where patient input would be most valuable.

• Plain language: Summaries of each work package were provided in clear, accessible English.

• Matchmaking: EULAR helped align PRPs with the work packages most relevant to their interests and experience.

Following this, individual “meet-and-greet” sessions were held between PRPs and the respective work package leaders (or team members) to build connections and foster collaboration. To further support PRPs, EULAR created a dedicated package of resources containing valuable materials to facilitate their involvement. This package is continuously enriched with new content based on PRP feedback and emerging needs throughout the project.

Ongoing Roles for PRPs

• Our PRPs are actively involved in many aspects of the project, including:

• Clinical research and patient-facing documents

• Ethical committee contributions

• Communication and dissemination activities

• Co-creation of webinars

• Co-design of the iCare-RA model

• Health economics, including patient input on QALY assessments and alternative methods

Continuous Collaboration

To keep collaboration strong, EULAR organises regular meetings with PRPs, addressing challenges and ensuring good team dynamics. We also carry out regular evaluations of our patient involvement strategy — from both the PRP and consortium perspective — to keep improving and maximise the impact of this partnership

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Patient Engagement

Alongside involvement in research, the project also developed a patient engagement strategy to strengthen communication and dissemination.

Fourteen national patient organisations from consortium countries were approached and invited to collaborate. In dedicated meetings with the principal investigator and EULAR, the project was explained in clear, accessible language, and organisations explored how they could support dissemination within their existing communication activities.

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Who’s Involved: EULAR PARE and Other Patient Organisations

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1 Österreichische Rheumaliga, Austria, Tanita-Christina Wilhelmer  

2 ReumaNet vzw, Belgium, Nele Caeyers

3 Gigtforeningen, Denmark, Connie Ziegler

4 Deutsche Rheuma-Liga Bundesverband e.V., Germany, Dr. Jürgen Clausen

5 Associazione Nazionale Malati Reumatici ANMAR Onlus, Italy, Silvia Tonolo

6 National Association ReumaZorg Nederland, Netherlands, Gerardine Willemsen

7 Norsk Revmatikerforbund, Norway, Stine Dahl

8 Portuguese League Against Rheumatism, Portugal, Mariana Carvaho

9 Liga Reumatológica Española - LIRE, Spain,Marcos Séneca García Rodríguez

10 Reumatiker förbundet​, Sweden, Stina Nordström

11 RLS- Rheumaliga Schweiz, Switzerland, Annette Stolz

12 Arthritis and Musculoskeletal Alliance ARMA​, United Kingdom, Cathy Monaghan

13 The National Rheumatoid Arthritis Society, UK, Ailsa Bosworth & Peter Foxton

14 Versus Arthritis, United Kingdom, Pete Gowler

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Together we agreed on:

• Quarterly project updates, written by EULAR and the Patient Advisory Panel, ensuring content remains patient-centred and easy to understand.

• Dissemination of updates through patient organisations at national level.

• Additional creative contributions, such as patient interviews about living with difficult-to-treat RA. These are translated into English and shared on the project website for the wider community.

Why It Matters

Difficult-to-treat rheumatoid arthritis is a severe condition that profoundly affects patients’ lives. By combining direct patient involvement in the research with active engagement of patient organisations, the MDR-RA project ensures its work remains relevant, visible, and meaningful to those it seeks to help.

This dual approach strengthens communication, builds awareness across countries, and ensures the project reflects the needs and hopes of the patient community.

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“PRPs are not their diagnosis. They are individuals with unique experiences, and through their participation, they can widen the perspectives of research.” - Maryam Azimi (MDR-RA patient representative)