Ideation and Validation

Interviews were coded and analyzed to identify themes and trends across participants’ lived experiences. Data-driven findings were compiled into impact frameworks, a treatment journey map, opportunity areas, and recommendations. These materials were reviewed by research participants during validation workshops to confirm their accuracy and elicit further feedback. Their feedback has been incorporated into this report.

Implementation

The challenges that Long COVID and other infection-associated chronic illnesses pose require fresh thinking and novel approaches. “Healthathons”—health-focused innovation sprints with hackathon roots—bring together people with Long COVID, members of the health care community, and other interested parties to develop community-led solutions. By moving quickly from idea to prototype, we can accelerate innovative solutions that truly meet the needs of people living with Long COVID. (At the time of this report’s publishing, the Healthathon had yet to take place.)

Gaps and Limitations

Our participant community did not adequately reflect the Long COVID experiences of children, people who are unhoused, people who are currently or formerly incarcerated, and Native Americans and Alaska Natives. In the case of children, we were able to speak with their parents or guardians. In the case of the unhoused and the incarcerated, we interviewed subject matter experts whose nonprofits advocate for or administer support to these individuals. In the case of Native Americans and Alaska Natives with Long COVID, while we did speak to individuals who identify as such, we do not believe we heard from a representative sample, given the diversity of experiences within those communities.

Attributions

To ensure participants’ identities are protected, all names have been replaced with aliases. Personal details such as professions and hobbies, which appear both in quotation attributions and occasionally in quotes themselves, have also been changed.