A roadmap for development of community engagement: Early lessons learned from the RECOVER Initiative
Taylor, BD; Albert, SL; Marti, HK; et al., Progress in Community Health Partnerships: Research, Education, and Action, April 2026
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Publication Details
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. 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.
Authors
Brittany D Taylor, Stephanie L Albert, Heather K Marti, Sarah E Donohue, Leah Castro-Baucom, Gelise Thomas, Jasmine Briscoe, Alicia Chung, H Shonna Yin, Nasser Sharareh, Janelle Linton, Jacqueline Lindsay, Felicia D Blakely, Zanthia Wiley, Carol R Horowitz, Paul J Thuluvath, Hassan Brim, Hassan Ashktorab, Adeyinka O Laiyemo, Zaki A Sherif, Kim F Rhoads, Natasha J Williams, RECOVER Initiative
Keywords
Humans; Community-Based Participatory Research/organization & administration; Community Participation/methods; Patient Participation; Surveys and Questionnaires; Community-Institutional Relations; Quality Improvement/organization & administration