1241 Patient Leadership in Sleep Research: A Model for Training Patients as Investigators on Research Teams

Abstract Introduction Sleep apnea research has traditionally prioritized biometric indicators over patient-centered outcomes, often overlooking the quality-of-life improvements most valued by patients. Integrating patient investigators into research teams offers a pathway to ensure that study outcomes reflect patient priorities. In 2022, the Wellness, Sleep and Circadian Network (WSCN), formerly the American Sleep Apnea Association, received funding from the Patient-Centered Outcomes Research Institute to design and deliver a training program that equips sleep apnea patients with the skills needed to serve as patient investigators. Methods WSCN convened a Patient Leadership in Research (PLIR) committee composed of 12 sleep apnea patients representing diverse backgrounds. The PLIR committee reviewed existing publicly available educational resources and subsequently developed a 12-session curriculum – Patient Researchers Influencing Sleep Medicine (PRISM) – to prepare patients for active participation on research teams. The PRISM curriculum addresses sleep science, sleep apnea diagnostics and therapeutics, the structure and ethics of research, research validity, patient-centered and comparative-effectiveness research principles, and expectations for patient investigators. The program was delivered twice in 2024 and iteratively refined based on comprehensive participant feedback. Results The PRISM initiative trained 25 patient investigators, including the 12 PLIR committee members and 13 additional training participants. Training participants (not PLIR members) evaluated the sessions on a scale of 1 – 5, where 1 = “poor” and 5 = “excellent.” Participants rated each session on being “informative,” “engaging,” and “useful to you,” and responses were averaged. Of the 16 training sessions that were measured, 14 (88%) scored 4.0 or above (both introductory sessions scored 3.78). Additionally, 11 of the 13 PRISM participants completed post-training assessments. Among these respondents, nine (78%) reported feeling “very confident,” one (9%) “somewhat confident” and one (9%) “unsure” in their ability to contribute as patient investigators. Conclusion The PRISM pilot validates the feasibility of a standardized curriculum to bridge the methodological literacy gap between patients and investigators. High participant confidence suggests the model successfully democratizes research concepts for laypeople. While the training phase is complete, the program’s ultimate value will be measured by the successful integration of these cohorts into active trials which will be a primary focus of WSCN. Support (if any)