While much of the world has returned to life without COVID-related restrictions, not everyone shares this sense of normalcy. For people with the often-misunderstood condition known as long COVID, which disproportionately affects historically marginalized communities, the pandemic has led to lasting consequences.
At the forefront of the effort to understand long COVID and innovate effective treatments is the nationwide Researching COVID to Enhance Recovery (RECOVER) Initiative. Funded by the National Institutes of Health, the program brings together cohorts of patients, clinicians and scientists in hospitals throughout the nation who seek to understand, prevent and treat long COVID. The Boston COVID Recovery Cohort (BCRC) joins six local hospitals, including Brigham and Women’s, in a years-long effort to research the disease and populations most vulnerable to it.
In addition to the translational research these teams are conducting to characterize clinical long COVID, another vital partner of BCRC is its Community Partnership Table. One function of this community engagement group is to sponsor the Long COVID Community Education Forum Series. Through these regular virtual forums with local residents, a collection of Boston-area health equity leaders, health care providers and researchers — including several from the Brigham — have been sharing their insights about long COVID and making space for conversations about its diverse effects on individuals.
“Together with the BCRC Community Partnership Table, we are trying to effect change by educating the community, doing our best to bring care to the community and to vulnerable populations, and to try to learn from the community about their health care priorities and how conditions like long COVID are impacting them,” said Bruce Levy, MD, interim chair of the Department of Medicine, chief of Pulmonary and Critical Care Medicine, co-founder of the Brigham’s COVID Recovery Center and co-principal investigator of the BCRC with Ingrid Bassett, MD, MPH, of Massachusetts General Hospital.
Because it’s a relatively new condition, long COVID and its impacts are still the subject of global research. It’s estimated that at least 10 percent of people who have had COVID-19, even after being vaccinated, experience prolonged effects after recovering from the initial infection. Symptoms can include a wide range of new, returning or ongoing health problems — such as severe fatigue, cognitive difficulties and respiratory problems — and there is currently no test that can determine whether symptoms are a result of a prior COVID-19 infection.
Early RECOVER Initiative research showed Black and Latine people were disproportionately represented among adults requiring hospitalization for COVID. However, Black and Latine adults with severe disease had different post-infection symptoms than other patients, and further studies revealed most people diagnosed with the condition were white, non-Hispanic and likely to live in low-poverty areas. Researchers believe this is because long COVID is under-diagnosed in Black and Latine populations due to longstanding structural inequities and racism in health care, housing, education, employment and more.
“Many people in communities hard hit by COVID have not received any information about the symptoms of long COVID. Also, many clinicians may not have heard of long COVID or recognize the symptoms,” said Brigham hospitalist and health equity researcher Cheryl Clark, MD, ScD, associate chief of the Division of General Internal Medicine and Primary Care and an investigator on the RECOVER project. “That’s compounded by the fact that this is really an emerging field in terms of evidence-based treatments.”
Launched in March, the community education series aspires to change that.
The virtual forums cover a variety of topics, mixing presentations from experts with opportunities for participants to ask questions, express opinions and share stories. During the series’ first forum in March, experts shared data about how long COVID has affected different Boston communities. Since then, topics have ranged from accessing clinical support, dealing with grief and loss and, most recently, addressing policy changes — a key goal of the program, which brought together several policymakers, including U.S. Rep. Ayanna Pressley.
“We’re having people come together and not just listen, but actually transform and advance health equity and inform change,” said Jacqueline Rodriguez-Louis, MPH, MEd, program leader for Community Outreach in the Mass General Brigham Asthma Center, who has helped organize the forums. “It’s kind of like building a structure where you start with the foundation and then you build the other floors.”
Since the series’ launch, attendance has grown from around 40 for the first event to over 70 for the latest one. RECOVER leaders emphasized the importance of keeping long COVID at the forefront of public and health care discussions as conversations around the pandemic dwindle.
“My hope is that we can continue to keep the spotlight on this so that we’re learning together how to keep each other safe, how to keep each other healthy and how to build a more democratic society for all of us,” said Jacqui Lindsay, a local advocate, leader of the BCRC community engagement efforts and member of RECOVER’s National Community Engagement Group. “That’s what it’s going to take –– all of us working together and building a community in which we all belong and that will take care of what we need to achieve health equity.”
The team has made it a priority that community-based research doesn’t solely benefit researchers.
“Communities are not interested in being an outreach arm for a research project,” Lindsay said. “What communities want is to be real partners at the table to help define what research needs to be done to evaluate whether the project is successful.”
The Brigham RECOVER team hopes programs like this can build trusting partnerships with Black and Latine populations and communities, Levy said.
“Inclusion in research that focuses on the needs of vulnerable and marginalized communities can be viewed as an equity initiative, as Black and Latine populations are often under-represented in research; however, there have been unfortunate accounts of exploitation of minority and vulnerable subjects in past research projects. So, it’s well-founded mistrust that we need to earn back as research and health care leaders,” Levy said.
Part of building that trust is sharing information and data with the community that helped provide it.
“Yes, they were involved in the study, but what next? They can’t just wait for the publication. The majority of them, or a good portion of them, might not know where to look for the publication or even understand it,” Rodriguez-Louis said. “This is the next best thing — that they will be with communities of people going through this same thing and they get access to this new information.”