This post was originally published on the U.S. Department of Health and Human Services blog.
Kristen Honey is the Chief Data Scientist and Executive Director of InnovationX at the Office of the Assistant Secretary for Health (OASH), Kathleen Carroll is a U.S. Digital Corps Fellow at OASH, and Michael Iademarco is the Rear Admiral and Assistant Surgeon General at the United States Public Health Service Commissioned Corps and the Deputy Assistant Secretary for Science and Medicine at OASH.
Summary: Long COVID is real. We’re using the Health+ Human-Centered Design approach to learn from those experiencing it firsthand and find solutions.
What is Long COVID? How does it impact people? What can we do to address it?
Throughout the pandemic, some people with COVID-19 have experienced new or lasting symptoms beyond their initial infection. These long-term effects of COVID-19 are known as Long COVID. Estimates vary, but research suggests roughly 5 to30% of people infected with COVID-19 are impacted by Long COVID and its associated conditions. Through the Health+ Long COVID Report we heard directly from Long COVID patients. Patients like Tara whose journey to find treatment illuminated opportunities for improvement in areas like health care delivery, technology, and public policy.
For people like Tara, a participant in the Human-Centered Design approach and a recent graduate and theater producer living with Long COVID, these symptoms can have a serious impact on day-to-day life. “[Long COVID] is a change in how I have to live my life,” Tara said. “I can’t conform to the traditional nine-to-five in the same way anymore, because my body is prioritizing healing over everything else.”
Listening, Learning, and Researching
The new Health+ Long COVID Report brings the personal experiences of people like Tara, with lived experience of Long COVID, to the forefront of defining solutions. By positioning the people impacted by Long COVID as active participants in their own research, the Health+ Long COVID Report provides an opportunities framework with recommendations for advancing equitable change across government, public health, healthcare, and other ecosystems.
A few examples of recommendations detailed in the report include the development of materials by healthcare providers for Long COVID patients to share with their loved ones to educate them on the condition. Others include insurance providers updating plan guidelines that align coverage with medical treatments that improve health outcomes for people with Long COVID. They further suggest that educators and employers should support accommodations for people living with Long COVID that allow them to continue to work and study, and federal agencies disseminating Long COVID messaging to let people know Long COVID is real and is a serious public health issue.
People are the experts of their own experiences, and in the Health+ Long COVID Report, their perspectives are integrated into the social, public health, and economic solutions to support the Long COVID community. Combining over 1,000 hours of interviews, workshops, and Human-Centered Design and Customer Experience (CX) research with the public, this report puts people at the center of government innovation and gives direct insight into our nation’s most pressing health issue. The Health+ process ensures people and communities impacted by Long COVID were involved in every step of the report’s creation, from informing the research plan to validating the recommendations made.
The release of the Health+ Long COVID Report is one step in our journey toward innovating solutions for Long COVID, and a continuation of our commitment to incorporate the patient voice into the solutions. 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.
Research into Long COVID continues across government, academic, and public sectors. 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. Together, these robust frameworks for information continue to guide our response to Long COVID and the shared goal of improving the quality of health and life for people living with Long COVID.
Read the Health+ Long COVID Report, and share it with your colleagues, partners, and loved ones. To keep the dialogue going, follow @HHS_Innovates on Twitter.