Work

Community Engagement in Long Covid: Insights From the Boston COVID Recovery Cohort

Year: 2025

Type: article

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 centring 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.

Source: Health Expectations

DOI: 10.1111/hex.70493