Implementing the PEIR Framework and PEIRS-22 to facilitate improved and sustainable patient engagement in OMERACT

BACKGROUND: OMERACT (Outcome Measures in Rheumatology) is an international initiative focused on improving outcome measurement in rheumatology research, fostering collaboration among PRPs, clinicians, and researchers to develop Core Outcome Sets. The 22-item Patient Engagement In Research Scale (PEIRS-22) is a tool designed to measure the level of meaningful patient engagement and guide efforts towards improvement. AIM: 1) To describe the current profile of patient engagement at OMERACT using the scores generated by the PEIRS-22 and 2) to assess the validity of the PEIRS-22 within the OMERACT group of PRPs. METHODS: We administered the PEIRS-22 to assess the level of meaningful engagement of PRPs with OMERACT. We compared the scores with self-rated participant engagement, and asked open ended questions to investigate the validity of the tool in the OMERACT PRP population. RESULTS: Overall engagement was meaningful and correlated to self-reported level of engagement. However, there were components and items that were flagged as priorities for improvement (Convenience, Benefits and Team Environment, and specifically items PR11: I participated in making decisions about the project, T2: I was an equal partner in the research project team, and SU1: I received sufficient support to contribute to the project. CONCLUSION: This study highlights the validity of the PEIRS-22 within OMERACT and reveals satisfactory levels of meaningful PRP engagement. As OMERACT continues to learn and evolve, the PEIRS-22 will be integral in developing a structured and consistent approach to patient engagement