Representatives identify community needs to improve support for people with Long COVID

RECOVER’s National Community Engagement Group (NCEG) recently completed listening sessions to document the barriers faced by people living with Long COVID. The NCEG’s new report on these sessions provides details about the challenges shared (PDF, 3 pages)—ranging from lack of awareness about Long COVID to limited access to healthcare. The report also puts forth recommendations to better support people living with Long COVID and their caregivers.

The NCEG, which provides leadership for over 100 Representatives working across RECOVER, centers the voices and lived experiences of patients, caregivers, and community members. NCEG Co-Chair Jacqui Lindsay inspired the listening sessions effort and shared the activity with fellow NCEG co-chairs, drawing on interviews and sessions she previously conducted within her RECOVER hub, the Boston COVID Recovery Cohort (BCRC). 

“The leadership group that guides BCRC—a cross-sector, community-driven group that we call the Community Partnership Table—noticed that a lot of Long COVID research was based only on the science,” she said, “and we wanted to hear directly from patients, caregivers, and providers.” Ms. Lindsay shared that the interviews and listening sessions were illuminating. “Many people were not able to access healthcare and other needed support. I shared this with my fellow NCEG co-chairs, and we decided to conduct a similar effort nationally through RECOVER with Community Representatives.”

Ms. Lindsay hopes these listening sessions can help provide a model for all research. “In much of research, the experiences, knowledge, and partnership of patients are not centered,” she said. “Instead, it’s treated as a marginal effort. There needs to be a major change—not only for people living with Long COVID, but also for people living with any other [health] condition.”

NCEG co-chairs invited all Community Representatives to participate in the sessions. Community Representatives advocate on behalf of their communities—communities where Long COVID has affected many people, communities where people have lower incomes, and communities where people may face challenges accessing healthcare services.

“RECOVER has done a great job of bringing together Representatives from all walks of life to participate in the initiative, and our listening sessions were reflective of the broader pool of Representatives,” said NCEG Co-Chair Frank Blanceró. Participants were of different ages, represented different racial and ethnic backgrounds, and lived in different types of communities across the country (such as rural and urban).

In total, 24 Community Representatives gathered across 3 sessions. Many Community Representatives are also Patient or Caregiver Representatives, meaning that they may also live with Long COVID or care for someone who does. 

The co-chairs worked together to decide which topics to focus on during the sessions and the questions they should ask participants. “We talked about the things we hear when we are out in our communities and connecting with others who are suffering from Long COVID,” said NCEG Co-Chair Leah Castro, MA. “We listened to understand which topics community members wanted more information about, and we put those topics into questions.”

The NCEG asked participants to share experiences with, and needs related to the following topics: 

• Getting an accurate diagnosis of Long COVID
• Accessing financial support for people with Long COVID who are no longer able to work
• Implementing workplace supports that can help people with Long COVID who are able to work
• Receiving medical care, mental health care, and social support 
• Identifying priorities for potential federal policies to address Long COVID

“The listening sessions helped us highlight that patients’ opinions and experiences are important,” said NCEG Co-Chair Etienne A. Carignan, who also participated in the sessions. “We want to ensure our voices are heard and push past the status quo of hearing only from medical professionals.”

The co-chairs, along with RECOVER staff, collected the information and experiences that surfaced during these listening sessions and created a 3-page report called “Addressing Long COVID: Key Themes and Recommendations from Community Listening Sessions.” Mr. Blanceró was struck by how consistently themes emerged across Representatives. “It showed that people from all different backgrounds were affected by the same systemic issues,” he said.

The co-chairs noted that access to healthcare and other resources, such as disability benefits, was limited by many factors, including race, ethnicity, age, income, language, and geography (whether someone lives in an urban or rural community). 

“We saw a profile of those who were able to get help versus those who weren’t,” Ms. Lindsay shared. “There were so many communities that didn’t know about resources that might be available. They weren’t being informed what [health condition] they had or what they could do about it.”

The report calls for better support across nearly all areas of daily life, including workplaces, healthcare facilities, schools, and other public spaces. Examples of specific recommendations include providing remote learning options in schools to support children with Long COVID and implementing more flexible workplace accommodations for those who cannot work in the same way they used to. The report also underscores the need for more patient-led research, improved access to mental health support and physical healthcare, and increased awareness about Long COVID for both healthcare providers and the public.

“When 24 people from different walks of life can come together and voice similar challenges, it says a lot that they all have similar things to share,” Ms. Castro said. “My hope is that the [report’s] calls to action are actually acted on.”