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

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.

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.

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.

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.

Engagement models can enhance the equity impact of long Covid research. Reflections and recommendations in this paper can inform future efforts.

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.