NIH consultation service helps RECOVER research to reach communities in need

Since its launch in 2021, the RECOVER Initiative has placed people affected by Long COVID at the center of its work—and their contributions are instrumental to moving Long COVID research forward.

People with Long COVID support discoveries about the condition by participating in different types of RECOVER studies. Many are answering survey questions, attending clinic visits, and contributing biosamples (such as saliva, blood, and urine). Others are participating in clinical trials that could find ways to address their symptoms. They also contribute ideas to help design RECOVER studies—and some patients serve as RECOVER Representatives, providing their lived experience and perspectives to help inform the research.

To enhance its efforts to meaningfully include and engage the Long COVID community with research studies, RECOVER collaborates with the NIH Community Engagement Alliance Consultative Resource (CEACR). CEACR is led by Community-Campus Partnerships for Health (CCPH) and the University of Pittsburgh Clinical and Translational Science Institute (CTSI).

NIH established the Community Engagement Alliance (CEAL) 4 years ago to promote health, improve health outcomes, and strengthen partnerships through community-engaged research. CEACR, which is part of CEAL, is a community-based organization and academic partnership that provides consultations to research studies to support their community engagement strategies. Since 2021, CEACR has completed over 60 projects that cover a range of health topics and groups of people.

In 2022, CCPH served (PDF, 335 KB) as a community and patient external advisor to RECOVER, including facilitating community listening circles with Long COVID patients, caregivers and advocates to inform RECOVER’s community engagement activities. This early work led to a longer partnership between RECOVER and CEACR to ensure that the initiative’s studies are guided by best practices in community-engaged research.

Since partnering with RECOVER, CEACR has consulted on many different stages of the initiative’s research process, from supporting the development of recruitment materials that will be relevant to people from all walks of life to providing guidance and resources on community-partnered writing and dissemination practices.

Ensuring study materials are informed by experts

One way that CEACR has supported RECOVER is by providing valuable feedback on how RECOVER shares information—including study materials, research results, events, and other messages. This feedback helps to ensure that these messages are accessible to people from all walks of life.

During enrollment for RECOVER’s adult and pediatric observational studies, study leaders noticed that fewer participants were enrolling who belonged to certain communities, including communities with people identifying as Black, Latino, or Indigenous who were greatly impacted by COVID-19. To ensure that the initiative included many different groups of people in its studies, RECOVER worked with CEACR to form panels of experts who could offer feedback on the materials being used for study recruitment, such as flyers posted in communities.

These expert panels included both RECOVER Representatives and other community leaders from CEACR’s nationwide network of experts in community-engaged research. The panels discussed both the language and the images used on the flyers and helped to ensure that the final materials would be relevant to members of their communities.

RECOVER shared these materials in both English and Spanish with over 200 study sites, 37 community groups, 21 CEAL sites, and 137 sites in the NIH RADx-Underserved Populations (RADx-UP) network. The RADx-UP initiative, which is now complete, aimed to provide all communities with access to COVID-19 testing.

To share the impact of their efforts, CEACR and RECOVER collaborated on a scientific poster to share community-centered practices used in these sessions. RECOVER, CEACR, and RECOVER Representatives collaborated to share these findings at the American Public Health Association’s (APHA) annual meeting in 2023.

Community activist Lydia Lerma, a RECOVER Representative, took part in these expert panels and provided input on study materials. She was also able to attend the APHA meeting to co-present insights and findings from the panels.

On her experience with the panel, Lerma shared, “I started crying looking at the images because I could totally relate to not only the text but the images. [The flyers to advertise RECOVER studies] are capturing people like me who have endured and who have gone through this, and someone’s listening to us now.”

Supporting a collaborative writing process for RECOVER research

In fall 2024, CEACR developed and led a series of 3 workshops called the Writing and Dissemination Institute (WDI). CEACR designed the WDI to support RECOVER investigators and Representatives in effective and efficient collaboration when they work together to draft manuscripts and other messaging about RECOVER results, such as plain language research summaries. The WDI, which drew 52 attendees, included presentations, discussions, and writing exercises.

“The WDI series became a supportive space for community co-learning and mutual support,” said Katie Hartman, program manager for CEACR. “The WDI allowed RECOVER patients, caregivers, and Representatives to share their experiences, priorities, and needs surrounding writing and dissemination [of RECOVER research].” 

Following the WDI, CEACR compiled information shared during the series along with other resources, guides, and recommendations for community-centered communication. This collection of resources is now available via a Dissemination Toolkit meant to further support RECOVER Representatives, researchers, and study teams as they publish and share RECOVER research. 

Uplifting partnerships in research

Another part of CEACR’s collaborative work with RECOVER included a quarterly workshop series called the Community Engagement Workshop Series. These workshops support RECOVER investigators and research staff in engaging with community partners and integrating community members into their research teams.

The most recent workshop, which was held in June 2025, featured speakers Elijah Kindred, MDiv, Health & Wellness Department Director with Bright Star Community Outreach; and Hugh Musick, MBA, Assistant Vice Chancellor for Population Health Sciences at University of Illinois-Chicago. The speakers, who represent ILLInet RECOVER, a hub of RECOVER study sites in Illinois, shared their experiences with establishing and maintaining meaningful and respectful research partnerships in communities.

Gathering feedback from the community 

In order to continue to support the collaborative work with RECOVER, CEACR is planning future events. CEACR recently hosted a series of virtual sessions called Community Convenings. These sessions enabled CEACR to hear from nearly 80 RECOVER Representatives and study participants and learn about their experiences and priorities.

CEACR will use feedback from these convenings to help shape an event that will signal the conclusion of their work with RECOVER: The RECOVER Health Research Summit. Updated information on the Summit will be shared in future issues of the RECOVER Report. 

“One of CEACR’s primary aims within its work with RECOVER is to enable two-way communication,” said Hartman. "We are always looking for ways to hear feedback from the communities impacted by Long COVID and RECOVER's research."

If you have any questions about CEACR or would like to get involved in co-planning RECOVER activities with CEACR, reach out to their Consult Co-Leads, Katie Hartman and Emily Finley, at CEACR@pitt.edu.