EULAR updates PRP guidelines: Enhancing patient involvement in rheumatic disease research

European Alliance of Associations for Rheumatology (EULAR)Jun 18 2024

In recent years, the benefits of involving PRPs has increasing been recognized. The role is an important one, which goes well beyond the inclusion of patients as study participants. PRPs are defined as people with a relevant disease who operate as active research team members. Crucially, this is on an equal basis with professional researchers – with the patient research partners adding the benefit of their experience and knowledge. This approach has been used in guideline development and clinical research, as well as to develop and collect patient-reported outcomes, patient preference studies, research grant application assessment, regulatory processes, and international research consortia. However, much has changed since the 2011 recommendations on PRPs were first written.

To address this, EULAR has updated the 2011 PRP recommendations. The work was completed by a task force of 13 researchers, 2 healthcare professionals, and 10 PRPs. The group completed a literature review to collect up-to-date information on the definition and role of PRPs, as well as to make recommendations on their recruitment, selection, and monitoring – and evaluate how much value they add to a project. The new work, published in June 2024 issue of the Annals of the Rheumatic Diseases, includes 10 individual recommendations, and 5 new overarching principles.

The overarching principles stress that PRPs provide input through active collaboration as equal partners with researchers, based on their experiential knowledge and expertise of the disease being studied. Informal caregivers can also provide input that is complementary to patients' lived experience. People undertaking the role of PRP add value and relevance to all types of research, which benefits patients and researchers alike. Finally, there is a need for open communication, trust, respect, and willingness to learn in order to achieve equal and successful collaboration.

Of the 10 recommendations, 7 are updated from the 2011 version, and cover topics such as when and how to involve PRP in research, as well as recruitment, training, and support. The recommendations also suggest that PRP contributions should be further recognized, including co-authorship or financial compensation when appropriate. Three new recommendations cover the role of the PRP-coordinator, the necessity to offer support and training to researchers and a call for more regular evaluations of the collaboration between PRPs and researchers.

EULAR hopes that the new recommendations will guide researchers and PRPs in future efforts and help to enhance collaborations – which should deliver effective working relationships as all parties strive to further knowledge in the field of rheumatic diseases. But ultimately, the key benefit will be health research that better meets the needs of patients and is more likely to result in improved long-term health outcomes.