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 inclusion of patient representatives​[*] 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. 

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 59 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.

Guiding brochure & reference cards explained

Following a review of initial experience with the concept, the EULAR task force, in charge of training the patient research partners and setting up the network, has developed guiding documents (​reference cards​ and an ​explanatory brochure​) that are available for project leaders, patient research partners and other interested parties. These materials have been realised with the support and input of a stakeholder group active in the field of rheumatology research.

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