The European Alliance of Associations for Rheumatology (EULAR) announced that it has updated its 2011 patient research partner recommendations. The new guidelines were presented by de Wit et al at the EULAR 2024 Congress and simultaneously published in the Annals of the Rheumatic Diseases.

EULAR defines patient research partners as patients with rheumatic diseases who perform active research alongside professional researchers—thereby adding their lived experiences with the disease and patient-reported outcomes to the understanding of rheumatic diseases. Inclusion of patient research partners has previously been utilized for guideline development, clinical research, patient preference studies, and research grant application assessment.

As a result of the increasing significance of patient research partners, a task force of 25 professional researchers, health-care professionals, and patient research partners conducted a literature review to identify new recommendations regarding the definition, role, recruitment, selection, and monitoring of patient research partners.

The task force devised 10 new recommendations and five new overarching principles—which included guidance on when and how to involve patient research partners, strategies for training patient research partners, co-authorship, financial compensation, the role of patient research partner coordinators, active collaboration, and open communication.

EULAR hopes its new recommendations can strengthen collaboration between patient research partners and professional researchers as well as improve patient outcomes.

A full list of disclosures can be found in the original study.