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

Area of Science:

• Biomedical research
• Community engagement
• Patient involvement

Background:

• Evolving best practices for patient and community engagement in biomedical research.
• Limited focus on patient engagement in the design and implementation of national studies.

Purpose of the Study:

• Describe the development and implementation of an initial patient and community engagement strategy.
• Present findings from the first year of data collection.
• Discuss lessons learned from the engagement process.

Main Methods:

• Utilized continuous quality improvement for strategy assessment and refinement.
• Collected data via online surveys from patient, caregiver, and community representatives.
• Invited 52 representatives to participate in the survey regarding their experience in a national initiative.

Main Results:

• Developed a framework for engagement, with a 67% response rate from 35 representatives.
• Representatives showed awareness of their roles and responsibilities.
• 76% felt comfortable expressing opinions and participating in decision-making.

Conclusions:

• The RECOVER initiative's engagement approach enhanced transparency and trust.
• This led to more impactful engagement between researchers and the community.
• The study highlights a successful model for national research initiatives.