New EULAR guidance on patient research partners aims to overcome ‘tokenistic’ approaches
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Key takeaways:
- Patient research partners in rheumatology research should actively collaborate as equal partners.
- At least two should be involved in each project, with a designated coordinator to support them.
All rheumatology research projects should include at least two patient partners, supported by a designated coordinator, who collaborate as equals with researchers, according to new EULAR recommendations.
The recommendations, published in Annals of the Rheumatic Diseases, are updated from previous guidance issued 12 years ago. They come after feedback “revealed that the EULAR recommendations were often not followed, or applied in a tokenistic manner,” lead author Maarten de Wit, PhD, leader of the EULAR Study Group for Collaborative Research, in Amsterdam, The Netherlands, told Healio.
“Broad recognition exists that, in both health research and health practices, the involvement of patients is critical,” de Wit said. “Striving for patient-centered care or value-based health care requires the input of people with first-hand experiences to ensure that research output and health services address unmet needs of patients, and align with the life/world of patients in terms of feasibility, affordability, accessibility and acceptability.”
To formulate new recommendations for the role of patient research partners in rheumatology, a EULAR task force performed a systematic literature review and met to hone their findings into overarching principles and recommendations. The task force included 13 researchers with basic, translational, clinical and social science backgrounds; two health professionals; and 10 patient research partners (PRPs) with rheumatic and musculoskeletal diseases (RMDs).
Task force members collaboratively formed research questions that guided a systematic literature review. Findings were presented at a second, in-person task force meeting, where members indicated their agreement with recommendations through anonymous votes.
The task force drafted five overarching principles, none of which were in the 2011 guidance:
- PRPs provide input to research through active collaboration as equal partners with researchers.
- PRPs are persons with an RMD who provide input to research based on their experiential knowledge and expertise.
- Informal caregivers can provide input to research complementary to the patients’ lived experience.
- PRPs add value and relevance to all types of research, and their involvement benefits patients, researchers and PRPs.
- Open, transparent communication, trust, respect and willingness to learn from each other are key factors for equal and successful collaboration.
According to de Wit, these were the first recommendations on PRPs to be based on evidence from a full systematic literature review, rather than only expert opinion.
He added that conducting a systematic literature review allowed the quality of evidence backing each recommendation to be graded “A” (highest quality) through “D” (lowest quality). The task force made the following 10 recommendations:
- PRPs should be involved in all types of research, including basic, translational and clinical research (Grade: C).
- Researchers should involve PRPs from project inception and throughout all its stages (Grade: B).
- A minimum of two PRPs should be involved in each research project (Grade: D).
- Recruitment of PRPs should be based on a clear and agreed-upon description of mutual roles and responsibilities, and should aim for diversity and inclusivity (Grade: C).
- The research team must provide a supportive environment and facilitate the contribution of PRPs to research (Grade: D).
- A designated coordinator should support the collaboration of researchers and PRPs (Grade: B).
- Researchers should have access to training and support to achieve effective communication and collaboration with PRPs as equal partners (Grade: D).
- PRPs should have access to training relevant to their roles (Grade: A).
- Researchers and PRPs should regularly evaluate their collaboration and adjust their way of working when needed (Grade: D).
- The contribution of PRPs must be appropriately recognized, including co-authorship when eligible; financial compensation should be considered (Grade: D).
The task force also proposed a research agenda for PRP involvement. In particular, de Wit said he would prioritize research into power imbalances, compensation of PRPs, and “studies related to the evaluation and monitoring of PRPs.”
Although the guidelines were primarily devised for research purposes, de Wit said they also have something to offer for clinicians.
“I believe that they are also beneficial for clinicians who are eager to improve quality in health care delivery, who are involved in health innovation or in developing new health care services,” he said. “These initiatives cannot be done without active involvement of dedicated patient partners that need support, training and acknowledgment similar to patient research partners.”
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