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

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.

To describe the initial engagement development and implementation; present findings from data collected during the first year; and discuss lessons learned.

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.

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.

The RECOVER initiative's approach promoted greater transparency and trust between researchers and the community, leading to more impactful engagement.