The importance of patient-partnered research in addressing Long COVID: Takeaways for biomedical research study design from the RECOVER Initiative's Mechanistic Pathways taskforce
Kim, C; Chen, B; Mohandas, S; et al., eLife
Published
September 2023
Journal
eLife
Abstract
The NIH-funded RECOVER study is collecting clinical data on patients who experience a SARS-CoV-2 infection. As patient representatives of the RECOVER Initiative's Mechanistic Pathways task force, we offer our perspectives on patient motivations for partnering with researchers to obtain results from mechanistic studies. We emphasize the challenges of balancing urgency with scientific rigor. We recognize the importance of such partnerships in addressing post-acute sequelae of SARS-CoV-2 infection (PASC), which includes 'long COVID,' through contrasting objective and subjective narratives. Long COVID's prevalence served as a call to action for patients like us to become actively involved in efforts to understand our condition. Patient-centered and patient-partnered research informs the balance between urgency and robust mechanistic research. Results from collaborating on protocol design, diverse patient inclusion, and awareness of community concerns establish a new precedent in biomedical research study design. With a public health matter as pressing as the long-term complications that can emerge after SARS-CoV-2 infection, considerate and equitable stakeholder involvement is essential to guiding seminal research. Discussions in the RECOVER Mechanistic Pathways task force gave rise to this commentary as well as other review articles on the current scientific understanding of PASC mechanisms.
Authors
C Kim, Benjamin Chen, Sindhu Mohandas, Jalees Rehman, Zaki A Sherif, K Coombs; RECOVER Mechanistic Pathways Task Force; RECOVER Initiative
Keywords
advocacy; epidemiology; global health; lived experience; long COVID; mechanistic pathways; patient-centered; patient-partnered; post-acute sequelae of SARS-CoV-2 (PASC)
Short Summary
Long COVID patients, caregivers, and community members contribute to all parts of RECOVER, including scientific research. These chosen members of the community are known as RECOVER Representatives. This paper, written by a team of RECOVER Representatives and researchers, talks about why they chose to work together and how their partnership has improved the study. They summarize some of the impacts of Long COVID and highlight the roles that patient advocacy can play in research. They also discuss what progress has been made so far in studying Long COVID and what challenges lie ahead. The authors state that the result of Representatives working together with researchers on study design, ways to include patients, and sharing community concerns has set a new example for the design of future biomedical research studies.