Abstract
Background
Patient research partners (PRPs) are people with a disease who
collaborate in a research team as partners. The aim of this systematic
literature review (SLR) was to assess barriers and facilitators to PRP
involvement in rheumatology research.
Methods
The SLR was conducted in PubMed/Medline for articles on PRP
involvement in rheumatology research, published between 2017 and 2023;
websites were also searched in rheumatology and other specialties. Data
were extracted regarding the definition of PRPs, their role and added
value, as well as barriers and facilitators to PRP involvement. The
quality of the articles was assessed. Quantitative data were analysed
descriptively, and principles of thematic content analysis was applied
to qualitative data.
Results
Of 1016 publications, 53 articles were included; the majority of
these studies were qualitative studies (26%), opinion articles (21%),
meeting reports (17%) and mixed-methods studies (11%). Roles of PRPs
ranged from research partners to patient advocates, advisors and patient
reviewers. PRPs were reported/advised to be involved early in the
project (32% of articles) and in all research phases (30%), from the
conception stage to the implementation of research findings. The main
barriers were challenges in communication and support for both PRPs and
researchers. Facilitators of PRP involvement included more than one PRP
per project, training of PRPs and researchers, a supportive environment
for PRPs (including adequate communication, acknowledgement and
compensation of PRPs) and the presence of a PRP coordinator.
Conclusion
This SLR identified barriers and facilitators to PRP involvement,
and was key to updating the European Alliance of Associations for
Rheumatology recommendations for PRP–researcher collaboration based on
scientific evidence.
Cited by
1 articles.
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