Enhancing health equity by bringing the experiences of people with Long COVID to the forefront of defining solutions

About HHS

The mission of the U.S. Department of Health and Human Services (HHS) is to enhance the health and well-being of all Americans by providing for effective health and human services and by fostering sound, sustained advances in the sciences underlying medicine, public health, and social services.

Within the Office of the Assistant Secretary for Health (OASH), HHS InnovationX forms coalitions and collaborations to tackle “wicked problems” with diverse stakeholders. The team uses resources from all sectors to speed up innovation and scale solutions for real-world impact. OASH sought a designer through the U.S. Digital Corps to help lead its Human-Centered Innovation portfolio and support projects that use qualitative research and data to handle the nation’s pressing health issues.

The challenge

Early in the COVID-19 pandemic, people and communities reported new, persistent, or reoccurring symptoms or conditions for weeks, months, or even years after COVID-19 infection. As of May 2022, one million American lives were lost to COVID-19. Roughly 6% of adults infected with the virus that causes COVID-19 can experience long-term effects, known as Long COVID, with nearly 25% reporting significant activity limitations. Research has shown that a Long COVID condition can last weeks, months, or years, and affect people of all ages, backgrounds, and demographics. Previously healthy individuals may become disabled while others heal. Researchers are working quickly to better understand this multi-systemic, multi-faceted disease.

The approach

A U.S. Digital Corps design fellow supported the creation of the Health+ Long COVID Report, highlighting the experiences of people with Long COVID and defining solutions. The Fellow helped lead a research team that completed over 1,000 hours of interviews and four workshops, all designed to listen and learn from people who are or were affected by Long COVID, caregivers, and practitioners.

The report includes patient archetypes, journey maps, and opportunity areas for action. The insights from this report will focus attention and interventions in areas that matter the most to the community, as determined by patients and those with first-hand, lived experience with Long COVID.

The Health+ Long COVID work enhances interagency efforts on Long COVID, partly in response to the President’s Memorandum on the Long-Term Effects of COVID-19.

The impact

The Health+ Long COVID Report is one step in the Health+ (pronounced “health plus”) process to improve patient outcomes by bringing together those affected with Long COVID and HHS to co-create solutions as equal partners.

The Health+ cycle culminates in a “Healthathon,” a health-focused innovation sprint to rapidly prototype and deliver solutions with the community. Healthathons bring together a diverse community of problem solvers. This includes those affected by Long COVID, whether current or prior patients, caregivers, healthcare personnel, policy experts, technologists, designers, and others to collaborate within specific focus areas. The insights from these groups of experts drive the development of new tools, action, and delivery with real-world impact to support the Long COVID community.

At the conclusion of the Health+ cycle, clinicians, policymakers, government agencies, public health practitioners, and support services will better understand how to help this important and growing community across the United States.

More understanding and awareness of Long COVID increases recognition of other chronic illnesses associated with prior infectious disease. This category includes illnesses such as myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS), Long COVID, persistent Lyme disease, and multiple sclerosis occurring with Epstein-Barr virus (EBV). Some people with chronic illnesses also experience stigma in their interactions with healthcare providers and other members of the public. Long COVID research has the potential to benefit these communities, in the same way that research into other chronic illnesses may benefit the Long COVID community.

The Health+ Long COVID research, and the tools and insights it provides, helps improve patient outcomes to improve health equity for all.