Engaging patients and researchers in RECOVER clinical trial protocol development: Key lessons

The RECOVER Clinical Trials Protocol Working Groups (PWGs) were established to rapidly design trials addressing Long COVID by incorporating the complementary expertise of researchers, clinicians, and patients, caregivers, and community representatives (Representatives). This paper explores the engagement of Representatives in protocol development, highlighting their contributions, challenges faced, and lessons learned. A survey of PWG members revealed that while most Representatives felt their input was valued, gaps in role clarity, communication, and integration of feedback persisted. Representatives emphasized the importance of understanding patient burden and lived experience, while researchers and project leaders noted the value of inclusive perspectives. Findings underscore the need for structured engagement practices, clear expectations, and ongoing support to ensure meaningful participation. These insights offer a roadmap for future clinical trial networks seeking to integrate patient voices in research design.