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

Preprint Publication Date:
November 2, 2025
Publication Status:
Awaiting Publication
Manuscript PDF File:

**Forthcoming in Progress in Community Health Partnerships (PCHP) 20.1. All rights reserved.**

ABSTRACT  

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. Sevent-six percent indicated that they felt comfortable expressing opinions and the decision-making process.

Conclusion: The RECOVER approach promoted transparency and trust between researchers and the community, leading to impactful participation.