Community engagement in Long COVID: Insights from the Boston COVID Recovery Cohort

• December 2025
• Health Expectations

Publication Details

DOI: 10.1111/hex.70493

Abstract

Background: In 2021, the National Institutes of Health launched a multi-centre observational study on Long COVID: Researching COVID to Enhance Recovery (RECOVER). Six Boston academic medical centres joined community partners to become the Boston COVID Recovery Cohort (BCRC), a consortium of RECOVER sites. Our consortium developed a community engagement model, and this manuscript shares lessons and recommendations.

Design and participants: The BCRC Community Partnership Table, which included community partners, senior equity leaders, academic researchers and health system collaborators, co-developed a charter to advance research, community education, clinical care, social support and institutional and policy change goals. BCRC engaged patients, providers, caregivers and legislators via multiple communication channels.

Findings: The BCRC Community Partnership Table faced several challenges: working within a novel, evolving pandemic; structural barriers to successful community engagement; perspectives on trustworthiness of research; and working across multiple organisations with distinct structures, resources and goals. There were also successes: leaders who were invested in community engagement; a focus on inclusive network building; co-production; flexible communication channels; a shift to centering communities and patients; and connection with the legislature to support broader policy impacts.

Discussion: To inform future community engagement models, we recommend the following: (1) healthcare research funders should build in time and resources for community engagement; (2) study consortia should include community engagement specialists in decision-making positions from the outset; and (3) community members should have prominent roles leading research engagement efforts.

Conclusions: Engagement models can enhance the equity impact of Long COVID research. Reflections and recommendations in this paper can inform future efforts.

Patient or public contribution: The project included community leaders, community-based organisations, people with Long COVID, and those caring for people with Long COVID. Community leaders, community-based organisations and people with Long COVID are included in every aspect of the network. They inform decision-making, play a key role in network leadership and are also all represented within the authorship team.

Authors

Marisha E Palm, Callie A Gu, Ingrid V Bassett, Bruce D Levy, Li Qing Chen, Janice John, Cheralyn Johnson, Jacqui Lindsay, Rebecca Lobb, Netia McCray, Bisola Ojikutu, Linda Sprague Martinez, Jacqueline Rodriguez-Louis, Alice Rushforth, Robert Torres, Danielle L Zionts, Cheryl R Clark

Keywords

community engagement; community leadership; community partnerships; community‐based organisations; long Covid; network building