A Roadmap for Development of Community Engagement: Early Lessons Learned From the RECOVER Initiative

Background: Best practices for engaging patients and the community in biomedical research evolved significantly in recent years. However, few focus on patient engagement in the design and implementation of a national study. Objectives: To describe the initial engagement development and implementation; present findings from data collected during the first year; and discuss lessons learned. Methods: Data were collected as part of continuous quality improvement efforts to assess and refine the engagement strategy. Fifty-two patient, caregiver, and community representatives were invited to complete a brief online survey about their experience participating in a national initiative. Results: A framework for engagement was created and 35 representatives completed the survey (67% response rate). Representatives demonstrated awareness related to their roles and responsibilities. Seventy-six percent indicated that they felt comfortable expressing opinions and the decision-making process. Conclusions: The RECOVER initiative’s approach promoted greater transparency and trust between researchers and the community, leading to more impactful engagement.