Executive Summary

In April 2022, the Biden administration issued the Presidential Memorandum on Addressing the Long-Term Effects of COVID-19, directing the U.S. Department of Health and Human Services (HHS) to coordinate a government-wide response to the long-term effects of COVID-19. As mandated in the memorandum, HHS published two reports in August, Services and Supports for Longer-Term Impacts of COVID-19 and the National Research Action Plan on Long COVID.

Building on this momentum, the Health+ Long COVID Human-Centered Design Report complements the findings and recommendations of these earlier reports by broadening the conversation and elevating what is often underrepresented in Long COVID statistics, scientific literature, and policy making—the narratives and expertise of people with Long COVID and what they want and need to live better, healthier lives. Differences between these three reports may occur due to varying methodologies, but they share a common goal: to improve the quality of care and life for those impacted by Long COVID.

To ensure the lived experiences and perspectives of people impacted by Long COVID are integrated into the social, public health, and economic solutions being created to support the Long COVID community, the Health+ Long COVID program used a process called human-centered design, which centers the very people impacted by a particular health challenge in understanding and developing solutions to it. From the start, we worked closely with people and communities impacted by Long COVID. As active participants, they informed our research plan, shared their experiences and expertise with us, reviewed our draft findings to ensure they were accurate and representative, and recommended solutions.