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

European Alliance of Associations for Rheumatology Jun 18 2024 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.

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 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.

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.

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.Journal reference:de Wit, M., et al.

Source: Healthcare Press (healthcarepress.net)

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