RECOVER Representatives help inform Long COVID sleep research through empathy, expertise, and engagement

In the RECOVER clinical trials, Patient, Caregiver, and Community Representatives from across the country share their lived experiences and insights to help inform studies that include, respond to, and support people interested in being part of this important research. 

RECOVER Representatives are people living with Long COVID, caregivers and advocates for those with Long COVID, and community members who live where the COVID-19 pandemic affected large numbers of people. Four RECOVER Representatives—Mirlesna Azor-Sterlin, Jeannie Karwowski, Geri Kaleponi, and Gema Ortiz—were chosen to serve as RECOVER-SLEEP Representatives. They meet monthly to guide recruitment, retention of those in the trials, and the sharing of results from the RECOVER-SLEEP Hypersomnia (Modafinil/Solriamfetol) and Complex Sleep Disturbances (Melatonin + Light Therapy) trials, both of which are actively recruiting participants. 

One key example of the role that RECOVER-SLEEP Representatives played was the development of a sleep diary. Trial participants use this booklet to track their sleep for 1 week at the start and another week at the end of the 8- to 10-week study period (the length depends on which RECOVER-SLEEP trial they join). Representatives tested the sleep diary themselves and shared it with others in their community before the study began. They gave important feedback on how to improve the sleep diary before it was used by trial participants. Their inputs called for clearer time-of-day references and example entries to help people complete the diary. 

“When I shared the original version of the sleep diary with the kupuna (Hawaiian elders), they didn’t understand what to do,” Ms. Kaleponi said. “Simplifying the language in the final version made a big difference for my community.” 

“Advising on behalf of Latin American elder groups and caregivers in Utah who are skeptical of medical services was powerful,” Ms. Ortiz added. “It was very satisfying to see our inputs added to the sleep diary.”

To further improve accessibility, Representatives also recommended visual instructions. To respond to this feedback, the study team created a short video showing how and when to use the sleep diary and examples of answers for each question. 

“Our feedback wasn’t just heard—it was implemented,” said Ms. Azor-Sterlin. “It meant so much that many of our suggestions were incorporated, thought about, or talked about. I feel proud that my voice might help one more Haitian, one more woman, or one more mom.”

Ms. Azor-Sterlin also shared how the experience of testing the sleep diary helped her recognize patterns in her own sleep. “Tracking my sleep helped me realize I could make changes based on how I felt,” she said. “It was hard but also refreshing.” 

RECOVER-SLEEP Representatives have also guided improvements to the broader experience for trial participants. They reviewed the study’s recruitment and retention materials to make sure they were culturally responsive, suitable for varying levels of health literacy, and at an appropriate reading level.  They also co-created a guide for participants that outlines tips for clinical trial sites, families, and caregivers on how to better engage people with Long COVID during sensitive times, such as the winter holiday season.

Although not all suggestions can be implemented, the Representatives have made contributions to the trials in many ways. “Our Representatives have been instrumental in helping us create a study environment that is not only scientifically rigorous but also welcoming and supportive,” said Dr. Christina Barkauskas, MD, one of the co-chairs for the RECOVER-SLEEP clinical trials.

Representatives also provided feedback on the process for screening potential participants and shared insights on how sites can create a more empathetic environment for enrolling and retaining participants. They offered guidance for how best to support participants throughout their experience in the RECOVER clinical trials. 

“For patient retention, we also discussed mobility and transportation needs, and ways to make people feel accountable and connected to the study,” said Ms. Ortiz. “It’s important to find opportunities for real interactions with the staff at the research site.”

Ms. Karwowski shared that her own experience living in central Massachusetts and regularly driving into Boston for medical appointments has been stressful. “Driving there is so hard because the traffic is really bad, but not everyone can easily get into the city—especially those living with Long COVID symptoms,” she said. “As RECOVER Representatives, we offer a lot of different considerations for participants who may want to be part of the clinical trials.”

RECOVER Representatives come from different walks of life, which give them many differing perspectives. These various perspectives have strengthened the collective knowledge they’ve shared with RECOVER and have greatly improved the research.

Ms. Karwowski emphasized how the group’s varied backgrounds enrich the monthly discussions and feedback. “Each of our stories matters. When we meet, we’re talking about the topic of Long COVID, but our lived experiences are all so different—that’s what makes our input powerful.”