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Coforma
Project
Health

Translating Lived Experiences Into Evidence-Based Recommendations

Using a human-centered design process, Coforma worked alongside 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.

Understanding Long COVID Through Human-Centered Design

Client Name(s):
US Department of Health and Human Services
Partner Name(s)
INSI Cloud
Delivery Date:
October, 2022

To accelerate solutions for people living with Long COVID, we led with empathy to meaningfully engage them, working collaboratively to identify what they want and need to live healthier and more supported lives.

During the pandemic, people who had been infected with COVID-19, from all backgrounds and communities, began reporting symptoms lasting or fluctuating beyond three weeks, sometimes with disabling consequences. These individuals reported a variety of symptoms—long-term effects of the COVID-19 infection which have come to be known, collectively, as ‘Long COVID.’ According to the Centers for Disease Control and Prevention (CDC), nearly one in five American adults who have had COVID-19 still have Long COVID, with symptoms ranging from mild and barely perceptible, to ever present and wholly debilitating.

In April 2022, the US Department of Health and Human Services (HHS) published two reports, Services and Supports for Longer-Term Impacts of COVID-19 and the National Research Action Plan on Long COVID. To complement the findings and recommendations of these earlier reports, HHS leveraged Coforma’s Health+ program to broaden the conversation and elevate 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.

The Health+ Long COVID program cycle included the development of the Health+ Long COVID Human-Centered Design (HCD) Report, the creation of a three-part animated video series to convey the lived experiences of people living with Long COVID, and a private Healthathon to innovate solutions based on the research done by Coforma.

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 over the last two and a half years . . . . It actually speaks to the experiences of Long COVID patients and their caregivers.
Imani Interior designer, sister, and person with Long COVID

Our Approach

We built relationships with people from the Long COVID community—people with Long COVID, caregivers, health care providers, advocates, and other subject matter experts—and worked together to understand their real and immediate needs.

After extensive desk research, we worked closely with Long COVID advocacy organizations and other community-based organizations to recruit a diverse community of over 60 people to participate. All participants were financially compensated for their time and expertise. For people with Long COVID, participating in a research process costs them time and energy, but it can also cause them physical and emotional discomfort and pain. Anticipating participants’ needs and circumstances, we designed an engagement process that was accessible, inclusive, and safe, providing various options for participation, from virtual workshops and interviews, to asynchronous audio diaries and virtual postcards.

After analysis and synthesis, our data-driven findings were compiled into impact frameworks, treatment journey maps, and opportunity areas that translated people’s lived experiences and needs into an evidence-based, actionable opportunities framework.

A grid of spreads from the Coforma Health Plus Long COVID report at a 30 degree angle on a dark blue background

Human-Centered Design Report

A foundational principle of the Health+ program is that people are the experts in their own lives and health experiences. As active participants, the Long COVID community informed our research plan, shared their experiences and expertise with us, reviewed our draft findings to ensure they were accurate and representative, and recommended solutions. This report is a reflection of their narrative and expertise.

PDF download | 15.9 MB

Download the report

This experience grid illustrates the varying intensity and nature the impact Long COVID has on people’s lives varies dramatically, caused primarily by two factors, severity of Long COVID and contextual support.

Experience Grid

The intensity and nature of the impact Long COVID has on people’s lives varies dramatically. This variance is caused primarily by two factors: the severity of one’s Long COVID, and their contextual support, the latter of which is influenced by a range of social determinants of health. The experience grid we created outlines two things: how and why the impact of Long COVID on individual lives varies from person to person, and the factors that have the potential to increase health disparities between peoples and communities.

Illustrating the ideal treatment journey alongside someone's actual journey provides a visualization of of where and how to improve care delivery and the patient experience.

Treatment Journey

Most, if not all, people we spoke to with Long COVID struggled to access the care they needed. Through interviews and journey mapping activities, we identified an ideal treatment journey and set of steps for seeking care for people with Long COVID. To contrast this streamlined experience, we developed a journey map to reflect the actual experiences of people with Long COVID, identifying pain points and barriers each step of the way that make accessing care a sometimes insurmountable battle.

This opportunities framework acts as a guide for developing plans and "action items" across industries and sectors existing in four key ecosystems; public, healthcare, assistance, and innovation.

Opportunities Framework

We organized research takeaways and recommendations, directly from research participants, into an opportunities framework for advancing equitable change across public, health care, assistance, and innovation ecosystems. These recommendations are intended to holistically support people with Long COVID by enlisting change from a range of audiences, including health care providers, assistance providers, educators, employers, researchers, advocacy organizations, and the general public.

Living with Long COVID Videos

To coincide with the public release of the report, we developed three short videos that humanize the issue of Long COVID. The central characters are composite and based on real stories told by the people who participated in the research process. Each video demonstrates the potentially cascading effects of Long COVID on people’s lives and of the need for a host of supports and solutions for people with Long COVID beyond the scientific and medical advancements in place today.

Meera

Training healthcare professionals to listen to patients and know how to look for potential Long COVID symptoms can validate the experiences of people with Long COVID and help them more effectively access quality, competent care.

When Meera was diagnosed with COVID-19, they thought they’d be back on their feet soon. But days turned into weeks, and weeks turned into months, and their doctor keeps telling them it’s anxiety.

Mikey

Providing support to navigate the complex processes of applying for disability insurance, Medicaid, and other assistance can help people with Long COVID access the healthcare and financial help they need.

Mikey lives in a different state than his family and childhood friends. He lost his job during the pandemic and when he got sick, separated from his support network, he couldn't get through the paperwork because of his brain fog.

Assim and Mitra

Schools and businesses that offer flexibility and accommodations can help people with Long COVID and their caregivers focus on their health while still engaging in daily life.

High school student Assim tested positive for COVID-19 but didn’t need to go to the hospital. Months later he’s experiencing symptoms that prevent him from going to classes and doing homework. Online classes and being able to have in-person help from his mom, Mitra, helped him stay on track, but with his school going back to in-person classes he’s struggling.

Project Team

  • Ashleigh Axios Ashleigh Axios Lead, HCD Project Delivery
  • Monica Bassi Monica Bassi Project Manager
  • Betsy Ramaccia Betsy Ramaccia Lead Design Researcher
  • Michele Washington Michele Washington Design Researcher
  • Alyssa Liegel Alyssa Liegel Design Researcher
  • Aaron Adams Aaron Adams Designer
  • Vanessa Sim-Kang Vanessa Sim-Kang Communication Strategist
  • Evan Burnett Evan Burnett Accessibility Specialist

Technology

  • Google Sheets for recruitment management
  • Google Calendar and Doodle for research scheduling
  • Zoom for virtual workshops, interviews, and communications with client
  • Slack for continuous asynchronous communication
  • Google Drive to maintain a shared, organized folder to house final files
  • Dovetail for transcription and synthesis
  • Mural for synthesis, brainstorming, collaboration of infographics, creative direction for illustration
  • SpeakPipe for audio diary recordings
  • Monday.com for tasks, task prioritization, and due dates

Accessibility

  • Adobe Acrobat
  • Adobe InDesign
  • CommonLook PDF
  • PDF Accessibility Checker 2021
  • NVDA

Design

  • Figma for brand components
  • InDesign for report layout
  • Adobe Illustrator for charts/infographics and illustration backgrounds
  • Procreate for illustration background patterns, garnishes, and fillers

Research Practices

  • Secondary research
  • Stakeholder interviews
  • Discovery workshops and listening sessions
  • One-on-one interviews
  • Asynchronous audio diaries and virtual postcards
  • Research participant review of draft findings and recommendations

If you have a challenge we could help you solve, we’d love to hear from you.