RECOVER's trial protocol groups found patient and community input useful but unevenly integrated.
Evidence
This survey study examined Protocol Working Group members' experiences with representative engagement during RECOVER clinical trial protocol development.
Caveat
The findings describe engagement perceptions and process lessons, not trial outcomes or whether patient input changed protocol effectiveness.
Simplified
The RECOVER Clinical Trials Protocol Working Groups (PWGs) were established to rapidly design trials addressing 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.
Key numbers
41%
Representative Inclusion Rate
Percentage of Representatives who responded to the survey out of the total invited.
71%
Positive Contribution Perception
Percentage of survey respondents who felt their contributions to the trial protocol were valued.
46%
Role Clarity Disagreement
Percentage of respondents who felt their roles were not clearly defined in the PWG.
Full Text
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