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1) HHS Releases Long COVID Report Providing Insights and Opportunities to Support Patient Community [news release]

A new report released by the U.S. Department of Health and Human Services (HHS) highlights patients’ experience of Long COVID to better understand its complexities and drive creative responses by government leaders, clinicians, patient advocates and others.

Long COVID is a set of conditions. Researchers have cataloged more than 50 conditions linked to Long COVID that impact nearly every organ system. Estimates vary, but research suggests that between 5 percent and 30 percent of those who had COVID-19 may have Long COVID symptoms, and roughly one million people are out of the workforce at any given time due to Long COVID. This figure equates to approximately $50 billion annually in lost salaries.

The Health+ Long COVID Report builds on the President’s Memorandum on Addressing the Long-Term Effects of COVID-⁠19 and the two previously issued HHS Long COVID reports. The report was commissioned by HHS and produced by Coforma, an independent third-party design and research agency. It provides recommendations on how to deliver high-quality care, and relevant and intentional resources and supports to individuals and families impacted by Long COVID. . . .

Last week, the Administration sent a $750 million-dollar supplemental funding request to Congress to support Long COVID research and treatment. This funding request would support HHS and their continued work on Long COVID, providers who serve patients with Long COVID and its associated conditions, and community-based organizations that assist with case management and provide other essential services and supports. By developing a wrap-around response this funding will assist in answering the report’s call to action.

Combining more than 1,000 hours of interviews, workshops, and human-centered design research with the public, this report puts patients at the center of government innovation and gives direct insight into our nation’s most pressing health issues. Human-centered design uniquely positions people as active participants in their own research. It treats patients as experts in their own life challenges and integrates their perspectives into the social, public health, and economic solutions created to support the Long COVID community.

“Long COVID isn’t one condition,” said Rear Adm Michael Iademarco, M.D., M.P.H., Deputy Assistant Secretary for Science and Medicine. “The Health+ Long COVID Report allows us to hear directly from patients so we can better understand the complexities of this multisystemic condition and enrich our understanding and response to Long COVID and its associated conditions.”

The Health+ Long COVID Report compliments the existing landscape of Long COVID scientific literature with the narratives and expertise of caregivers, frontline workers, and people experiencing Long COVID and its associated conditions.

The report offers a variety of short-term and longer-term recommendations that come directly from the patient experience. For example, healthcare providers should develop and share materials about Long COVID to educate patients and their loved ones. Insurance providers should update plan guidelines that align coverage with medical treatments that improve health outcomes for people with Long COVID. Educators and employers should support accommodations for people living with Long COVID that allow them to continue to work and study. Federal agencies should disseminate Long COVID messaging to let people know Long COVID is real and is a serious public health issue.

2) 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.

The Challenge: 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+™ exit disclaimer icon 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.

Archetypes: 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.

Journey Maps: 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.

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.

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