Coforma’s Health+™ (“health plus”) program applies human-centered design and research to cultivate solutions to the most pressing healthcare challenges. Health+ Long COVID, a program cycle sponsored by the US Department of Health and Human Services (HHS), engaged people and communities impacted by Long COVID to translate their lived experiences, needs, and visions for change into evidence-based, actionable opportunities to improve their quality of life and care.
Throughout the pandemic, people who had been infected with COVID-19 began reporting a variety of symptoms lasting or fluctuating beyond three weeks, ranging from mild and barely perceptible, to ever present and wholly debilitating. These long-term effects have come to be known, collectively, as "Long COVID."
In April 2022, the Biden administration issued the Presidential Memorandum on Addressing the Long-Term Effects of COVID-19, directing HHS to coordinate a government-wide response to the long-term effects of COVID-19. As part of their effort to fulfill the ask, HHS enlisted our program with the goal of broadening the conversation and elevating what is often underrepresented in Long COVID statistics, scientific literature, and policy making—the narratives and expertise of people with Long COVID and what they want and need to live better, healthier lives.
Using human-centered design and research methodologies and processes, we produced the Health+ Long COVID Human-Centered Design Report with an experience grid, journey maps, and an evidence-based, actionable opportunities framework, as well as a three-part animated video series highlighting composite stories and experiences of people with Long COVID and those who support them.
Health is complex and very personal. People are experts in their own lives and health experiences. We did not take a ‘tick-box’ approach to this project. Using a human-centered design approach to understand Long COVID meant meaningfully including the Long COVID community—people with Long COVID, caregivers, healthcare providers, advocates, and other subject-matter experts—as active participants who would inform our research plan, share their stories and experiences with us, review our findings to ensure they were accurate and representative, and finally, recommend solutions.
We worked closely with healthcare organizations and reached out to Long COVID advocacy groups and other community-based organizations to engage a diverse community of people within the Long COVID community to participate. Their time is valuable; all participants were compensated for their time and expertise.
A major challenge was to show experiences of the Long COVID community, who have, from the start, experienced stigmatization, gaslighting, and skepticism from the healthcare system, friends, and even family. Knowing this community also felt ignored by safety net programs, we wanted to meaningfully engage them to co-create authentic research processes that were equitable and restorative. Based on Coforma’s prior experience working with people impacted by complex health issues and systemic disparities, we overcame this challenge by identifying three key participation principles and three main strategies to guide our efforts.
Our participation principles were to be trauma-responsive, relational, and humble. We made sure to create spaces that were safe, validating, and gave participants control over their experience with us. We strived to build relationships and work alongside others over time. Finally, we recognized that we are not experts on the issue of Long COVID and instead focused on learning from and alongside the actual experts—those who have lived experience and expertise.
Applying these participation principles took the form of facilitating a series of discovery workshops, which included landscape mapping, a listening session, brainstorming, and journey mapping. These conversations and exercises shaped our research plan and helped us to understand the scope of its impact.
Next, we ensured participants had choice in and control over their experience. To ensure participation was accessible and inclusive, we developed three different ways to engage and share their experiences—a Zoom-based interview, completing a series of recorded audio diaries, or writing a “digital postcard.”
Finally, we validated our draft research findings with participants. We circled back with participants with our initial drafts as a check to ensure we hadn’t skewed or misinterpreted anything that had been shared with us. Validating our research findings was a key feature in finalizing the human-centered design report, which we used to shape the video narration script, and how characters and their experiences were developed. It was important to produce videos that would show what it’s like to live with Long COVID and help reshape conversations around what impacts and effects Long COVID has on someone’s life between friends, families, in healthcare, at the workplace, and in education.
While the vast impact of Health+ Long COVID is still playing out, the immediate effects were felt on a personal level: “I have looked at so many documents about Long COVID and this one is the most extensive one I've seen yet . . . . I feel like this is one of the first times that somebody understands the full scope of what has happened to a lot of us . . . . It actually speaks to the experiences of Long COVID patients and their caregivers,” said a participant.
Long COVID is caused by COVID-19, which makes it inherently a personal, complex topic, with competing ideas and theories. We faced campaign limitations, as Long COVID is categorized as a “sensitive event” in online social platforms. However, this project, its report, and its video series will continue to make an impact beyond this initial campaign. Research and studies about Long COVID are ongoing. This project will keep prompting conversation about what it’s like to live with Long COVID, supplementing emerging science and data, and demonstrating how people’s lived experiences can both elevate and prompt a broader conversation around what they want and need to live better, healthier lives.
Metric highlights include:
Earned media coverage from Healthcare Innovation, Bloomberg Law, Yahoo! News, CNBC, NewsNation, NY Post, The Washington Times, Kristin Garriss, Walker Bragman, Inside Health Policy, and others
Health+ website traffic increased 461.8% vs the prior period, with traffic attributed directly to Health+ Long COVID report and video artifacts
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