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

Marisha E Palm ^1,2, Callie A Gu ³, Ingrid V Bassett ^4,5

¹Tufts Clinical and Translational Science Institute (CTSI), Tufts University, Boston, Massachusetts, USA.
²Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, Boston, Massachusetts, USA.
³Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
⁴Division of Infectious Diseases, Massachusetts General Hospital, Boston, Massachusetts, USA.
⁵Harvard Medical School, Boston, Massachusetts, USA.
⁶Cambridge Health Alliance, Cambridge, Massachusetts, USA.
⁷North Shore Community Health, Salem, Massachusetts, USA.
⁸Innovation by Design, New York, New York, USA.
⁹Boston University Clinical Translational Science Institute, Community Engagement Program, Boston, Massachusetts, USA.
¹⁰Mbadkika, Cambridge, Massachusetts, USA.
¹¹Division of Infectious Diseases, Brigham and Women's Hospital, Boston, Massachusetts, USA.
¹²Division of Global Health Equity, Brigham and Women's Hospital, Boston, Massachusetts, USA.
¹³The Health Disparities Institute, UConn Health, Hartford, Connecticut, USA.
¹⁴Departments of Medicine and Public Health Sciences, UConn Health, Farmington, Connecticut, USA.
¹⁵Division of Pulmonary and Critical Care Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.
¹⁶Beth Israel Lahey Health, Cambridge, Massachusetts, USA.
¹⁷Medical Practice Evaluation Center, Massachusetts General Hospital, Boston, Massachusetts, USA.

⁰Tufts Clinical and Translational Science Institute (CTSI), Tufts University, Boston, Massachusetts, USA.

Health Expectations : an International Journal of Public Participation in Health Care and Health Policy +

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December 3, 2025

View abstract on PubMed

Summary

Community engagement in long Covid research is vital. Recommendations include dedicated funding, involving engagement specialists early, and empowering community members in leadership roles to enhance equity in research outcomes.

Area Of Science

Public Health
Clinical Research
Community Engagement

Background

The National Institutes of Health initiated the multi-centre observational study Researching COVID to Enhance Recovery (RECOVER) in 2021.
Six Boston academic medical centers formed the Boston COVID Recovery Cohort (BCRC) as part of the RECOVER initiative.
The BCRC developed and implemented a community engagement model, sharing its experiences and recommendations.

Purpose Of The Study

To share lessons and recommendations from the BCRC's community engagement model.
To inform future community engagement strategies in long Covid research.
To enhance the equity impact of long Covid research through effective engagement.

Main Methods

Established a BCRC Community Partnership Table with diverse stakeholders including community partners, equity leaders, researchers, and health system collaborators.
Co-developed a charter outlining goals for research, education, clinical care, social support, and policy change.
Engaged patients, providers, caregivers, and legislators through multiple communication channels.

Main Results

Faced challenges including pandemic uncertainties, structural barriers to engagement, and varying organizational structures.
Achieved successes through invested leadership, inclusive network building, co-production, flexible communication, and centering communities and patients.
Connected with the legislature to influence broader policy impacts.

Conclusions

Healthcare funders should allocate specific time and resources for community engagement in research.
Study consortia must integrate community engagement specialists into decision-making roles from the project's inception.
Community members should be given prominent leadership positions in research engagement efforts.

Keywords:

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