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 expe.
