Who are Patient Research Partners

Patient Research Partners are persons with an RMD condition who provide input to research, based on their experiential knowledge and expertise through active collaboration as equal partners with researchers. PRPs are not study participants, but people who join research teams to provide their knowledge, skills, experiences and expertise throughout the research cycle.

As a Patient Research Partner, you have the unique opportunity to collaborate with experts, influence scientific initiatives and contribute to ground-breaking advances in rheumatology. Ingrid de Groot and Coralie Bouillot share their experiences as Patient Research Partners (PRP) and explain the role, stages of involvement and benefits of being a PRP.

Dive into the FAQs

EULAR Recommendations for the inclusion of patient representatives in scientific projects

EULAR has recognised the pivotal role of patients in the development of recommendations for the management or diagnosis of rheumatic and musculoskeletal diseases. Patient representatives should engage with researchers in order to help improve methodology and research outcomes, and thus giving credibility to the results. This acknowledges and normalises the fact that patients should have say in health care and health research as decisions in these areas may directly impact their daily life. To provide guidance to task force leaders and patient research partners, EULAR has developed a set of ​recommendations for the involvement of patient research partners in rheumatology research​[*] published in the 'Annals of the Rheumatic Diseases'. 

Today, it is common practice for EULAR's task force leaders to involve one or two patient research partners in their projects. 

EULAR Online Course for Patient Research Partners

To be meaningfully involved in different research projects, people with rheumatic and musculoskeletal diseases (RMDs) benefit from specific education and training. EULAR developed an online course for people with RMDs who want to provide the patients’ perspective in rheumatology research.

EULAR Online Course for Patient Research Partners

Network of patient research partners 

A related initiative that EULAR has supported in the recent past is the establishment of a PARE network of trained patient research partners. This network of currently more than 50 competent patient representatives can be contacted whenever a need for reviewers of scientific research projects or active participation of trained patient research partners is required. Requests should initially be addressed to the EULAR secretariat which then ensures that the most adequate patient research partner is available for a specific project or task.

Important documents

EULAR has developed a set of practical reference cards to guide researchers and patient research partners (PRPs) working together in a scientific project. These cards are based on the update EULAR recommendations for the involvement of PRPs in scientific projects and on the modules of the EULAR Online Course for PRPs. Many research term abbreviations are explained in the EULAR PRP Glossary that accompanies these reference cards.

Starting a Patient Research Partner (PRP) Group on a national level

Over the last decade, the role of patients in rheumatology research has increased considerably. The European Alliance of Associations for Rheumatology, EULAR, has taken a leading role in promoting this progression by developing recommendations and mandating involvement of Patient Research Partners (PRPs) in all its taskforces and other scientific initiatives. Also, on national and regional levels, there is an appetite to explore different patient roles in research other than that of study participants. For that reason, EULAR has decided to produce this Starting a Patient Research Partner (PRP) Group on a national level guide (​see here​) to support patient groups to establish and support their own PRP networks.

[*]External link