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The following is a summary of “EULAR recommendations for the involvement of patient research partners in rheumatology research: 2023 update,” published in the June 2024 issue of Rheumatology by Wit et al.
Recognizing the significant evolution of patient research partner (PRP) roles since the 2011 EULAR recommendations on the involvement in rheumatology study, an update to the guidelines has become essential.
Researchers conducted a retrospective study aiming to update the 2011 EULAR recommendations regarding the involvement of PRP in rheumatology research.
They assembled a task force of 13 researchers, 2 health professionals (HCPs), and 10 PRPs, following the EULAR Standardized Operational Procedures. The methodology included an online meeting, a systematic literature review, and a subsequent in-person meeting to develop overarching principles (OAPs) and recommendations. The consensus among task force members was evaluated anonymously on a scale from 0 to 10.
The result showed that the task force established 5 new OAPs, revised 7 existing recommendations, and created 3 additional recommendations. The OAPs focused on defining a PRP, outlining the contributions, recognizing caregivers’ roles, highlighting the added value of PRPs, and emphasizing the importance of trust and communication in collaborative research. The recommendations covered the types and phases of PRP involvement, the suggested number of PRPs per project, necessary support for PRPs, training, and acknowledgment of contributions. The task force strongly agreed, ranging between 9.16 and 9.96 on new recommendations emphasizing researcher support, regular patient-researcher collaboration assessment, and a dedicated coordinator to facilitate the process.
Investigators concluded that the revised EULAR recommendations for PRP involvement were more firmly rooted in evidence and, along with the new OAPs, aimed to guide researchers and PRPs, enhancing PRP engagement in rheumatology research.
Source: ard.bmj.com/content/early/2024/07/04/ard-2024-225566
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