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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Short Summary
In this RECOVER study, researchers looked at how people with Long COVID, caregivers, and community members were included as partners in research. These partners are called Representatives. Researchers studied how Representatives joined RECOVER, how they took part in meetings and decisions, and how well this process worked. Researchers used surveys to learn about Representatives’ roles and experiences. The study found that most Representatives understood their roles and responsibilities. About 3 out of 4 said they felt comfortable sharing their ideas and taking part in decisions. The study found challenges, including words used in meetings that were hard to understand and not having enough time to share opinions. It also highlighted a need for clearer communication and more participation from rural and tribal communities. In addition to sharing their lived experiences, RECOVER Representatives work with researchers to help decide how studies should be conducted and how study results should be shared. Representatives' input keeps the research focused on what matters most to people affected by Long COVID. Representatives' input also makes it easier for everyone to understand what RECOVER researchers have done and what they've learned about Long COVID. This study is important because it shows that working with Representatives can help build trust between researchers and the community. Researchers also recommend ways that future studies can successfully partner with patients and community members.
This summary was prepared by the RECOVER Initiative.
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