Health+ Long COVID Report
The Health+ Long COVID Report brings the experiences of people with Long COVID to the forefront in defining solutions. The work 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 articulated by patients and those with first-hand, lived experience with Long COVID.
Human-Centered Design for Long COVID
The HHS Health+ ("Health plus") program uses human-centered design to co-create patient-centered solutions with people—not for people—impacted by the most pressing healthcare challenges. The goal is to improve U.S. government programs to better support and serve those affected. This Health+ model works best when applied to complex, multi-systemic, multi-disciplinary challenges like Long COVID in collaboration with patients, caregivers, practitioners, and diverse partner communities.
Early in the COVID-19 pandemic, people and communities began reporting symptoms that persisted weeks and months after the initial phase of illness. As of May 2022, one million American lives were lost to COVID-19. Up to 20% of survivors—or 16 million Americans and growing—develop Long COVID symptoms. Research has shown a Long COVID condition can last weeks or months, affecting 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.
A Proposed Solution: Health+
HHS efforts on Long COVID include human-centered-design research to understand Long COVID through the lived experiences of patients, caregivers, and frontline clinicians. HHS is listening to and learning from those most affected by Long COVID using the Health+™ model.
The Health+ Long COVID work aims to improve government services using human-centered innovation, while simultaneously advancing interagency efforts to address the longer-term effects of COVID-19 including Long COVID. The Health+ process involves those affected by Long COVID working side-by-side with HHS to co-create solutions, together, as equal partners, to improve patient outcomes with this complex disease.
Health+ Methods and Research Approach
The Health+ Long COVID cycle began in April 2022 and includes 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. At the conclusion of the cycle, clinicians, healthcare payers, healthcare systems, policymakers, government agencies, public health practitioners, social safety nets, and support services will better understand how to help this important and growing community across the United States.
Human-centered design and research methodologies include desk research, one-on-one interviews, workshops, and sessions designed to assess the validity of the learned conclusions. This approach is designed to uncover diverse stories and lived experiences from impacted people and communities. With additional input from a diverse group of partners, common themes are identified that intersect with Federal government levers of influence and are framed into opportunity areas.
The cycle culminates in a “Healthathon,” a health-focused innovation sprint with hackathon roots to rapidly prototype and deliver solutions with the community. Healthathons bring together a diverse community of problem solvers including 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. Health+ Healthathons transform insights from patients, so their understanding drives the development of new tools, action, and delivery with real-world impact that supports the Long COVID community today.
The Health+ Long COVID work augments and enhances interagency efforts on Long COVID, partly in response to the President’s Memorandum on the Long-Term Effects of COVID-19, but does not in any way replace scientific grants, public health programs, or other HHS efforts. Health+ is a complementary methodology, designed to understand this multifaceted disease through a new facet with Long COVID patients at the center of the process.
From the Long COVID interviews and workshops, the Health+ researchers synthesize common experiences into patient “archetypes,” or personas. Anecdotes shared by individuals can reveal larger themes as the basis for collective, shared experiences. These archetypes form research discovery insights to clarify a person or community’s needs, goals, barriers, and habits.
Archetypes enable teams to understand Long COVID through the human experience. Building the archetypes requires meeting people where they are—using their language and experience as their truth—while curating a collective wisdom from the crowd through anonymized experiences. Different archetypes serve as a guide to identify the diverse needs of impacted individuals and their communities. Archetypes build both understanding and empathy across diverse stakeholders, because everyone—even those not experiencing Long COVID—can view this complex condition through the lens of those impacted by the disease.
These documents step people across the course of an experience, the tools, and resources they use to complete certain stages in the process, the challenges or pain points that pose obstacles along the way, and the opportunities for enhancing or improving their experience. Journey maps are an output of the Health+ Long COVID cycle.
Opportunity areas are recommendations that provide ideas for improving the quality of care and lives for the impacted people and communities. They correspond with archetypes and journey maps, so that action and interventions will target systemic challenges, which are opportunity areas for federal action, that matter the most to those living with Long COVID.
Long COVID Healthathon
The Long COVID Healthathon is expected to bring together a diverse community to collaborate within specific focus areas. The design and focus of the Long COVID Healthathon will be informed by the interviews and workshops with patients, caregivers, and practitioners to co-create suggested outcomes.