Two women, both in their early 40s, are diagnosed with Long COVID. For Tasha, a graphic designer with private insurance and a remote job, the road ahead is tough but navigable. She has the time and flexibility to see specialists, the savings to cover what insurance doesn’t, and a partner who picks up the slack on the hard days.
For Maria, a single mom of two and a grocery store shift lead, the same diagnosis threatens to derail everything. There’s no paid time off, no car to get to appointments, no room in the budget for extra co-pays or medications. Her symptoms flare when she pushes through work, but missing a shift means risking her job. Eventually, follow-ups get missed. Medications go unfilled. She just lives with feeling bad.
On paper, it might look like Tasha and Maria and struggling with the same diagnosis, but their lived experiences couldn’t be more different.
These disparities often go unnoticed in policymaking and systemic decision-making. When policy is shaped in conference rooms far from clinics and living rooms, it’s easy to miss what’s actually happening on the ground for people like Maria and Tasha. How long are they waiting? What do they have to navigate? Who gives up?
That’s where journey mapping comes in. By capturing the full experience of seeking or providing care, from logistical barriers to emotional burdens, journey maps help reveal unseen struggles. They offer policymakers and product teams a grounded, human-centered lens for designing solutions that work in real life, not just ideal-case scenarios.
The Benefits of Journey Mapping Patient Experiences
A journey map visually represents a person’s experience accomplishing a goal from start to finish. It documents the steps they take throughout the experience, the tools and resources they use to complete those steps, the challenges or pain points that pose obstacles, and the opportunities for enhancing or improving the experience. They can also reflect the actions, thoughts, considerations, feelings, and worries that accompany each step.
Mapping out the same journey from multiple points of view can help unearth the patterns, discrepancies, opportunity areas, and pain points that occur on the journey.
Journey mapping patient experiences enables the viewer to understand the steps necessary for a patient to obtain the care they need, along with the emotional, financial, and systemic factors that may influence or prevent these steps. Patient experiences vary depending on the illness they are living with and their support, including financial resources, personal support, caregivers, location, and access to care. Mapping out the same journey from multiple points of view can help unearth the patterns, discrepancies, opportunity areas, and pain points that occur on the journey.
Journey mapping isn’t limited to a patient. This method can be used to better understand any stakeholder in healthcare, such as providers, payors, support services, and caregivers. It builds empathy and understanding by allowing viewers to comprehend the whole human experience associated with seeking or providing healthcare.
This kind of community engagement is crucial in policymaking, as well. Engaging patients, care providers, payors, caregivers, and other stakeholders ensures that policies reflect the needs of those they are intended to serve. By putting this work in front of policymakers, they are given tools to advocate for policy changes that can benefit the communities whose lived experiences we are telling.
Journey maps are also an important tool to prevent top-down decision- and policy-making, which may overlook the concerns of marginalized groups. When policymakers include community members’ voices, this builds trust and stable policy initiatives. Incorporating the lived experiences of patients can identify improvements to government services and interagency efforts toward better care.
A Closer Look at Long COVID Journey Mapping
The Long COVID Human-Centered Design Report was published in April of 2022. It aimed to 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.
From the start, Coforma worked closely with people and communities impacted by Long COVID. As active participants, they 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.
The report, a result of this process, includes an exploration of how and why the impact of Long COVID varies from person to person, the reasons for which have the potential to increase health disparities between individuals and communities. The symptoms of Long COVID can be mild and barely perceptible, or they can be ever-present and wholly debilitating. However, it is not simply the severity of Long COVID and the conditions associated with it that influence Long COVID’s impact on someone’s life, but a range of social determinants of health.
Phase 1: Discovery
In the discovery phase, we recruited a diverse community of individuals to learn alongside, including people with Long COVID, their caregivers, healthcare providers, advocates, and other subject matter experts. We conducted outreach using a variety of strategies: conversations with Long COVID advocacy organizations, including Survivor Corps and Body Politic; social media, including Instagram, Facebook, Reddit, and Twitter; through the networks of our partners at HHS; and through organizations with deep relationships in various communities, including the Tanana Chiefs Conference and the California Center for Functional Medicine.
After conducting desk research to review existing white papers, news articles, and reports on Long COVID, we initiated a series of four discovery workshops with people with Long COVID, caregivers, health care providers, advocates, and other subject matter experts. Their expertise and input informed our subsequent research plan and areas of inquiry.
We then employed a range of research methods to ensure an accessible, comfortable experience. These included 60-minute, semi-structured, remote interviews; audio diaries; and virtual postcards. We engaged over 60 people with Long COVID, caregivers, health care providers, advocates, and other subject matter experts.
Research focused on deeply understanding the experiences of identifying, diagnosing, and treating Long COVID; the extenuating impacts of Long COVID on lives, livelihoods, and communities; support and assistance for people living with Long COVID, caregivers, and care providers; perceptions and attitudes about Long COVID; and bright spots, opportunities, and aspirations for improving the quality of life and care for people with Long COVID.
Phase 2: Ideation
In the ideation phase, we coded and analyzed interviews to identify themes and trends across participants’ lived experiences. Using this information, we began to chronologically organize the shared experiences of our participants and create a journey map. One of the challenges our team faced was how to streamline and organize the information so someone with no prior knowledge could understand it while still capturing the complexity and difficulty of the journey itself.
We created a map that shows the many pathways to seeking treatment, including a path that ended with giving up because treatment was unobtainable. To reinforce the difficulty of the actual journey, we also created an ideal journey. Juxtaposed with the ideal journey of a person with Long COVID, the actual journey highlights the large discrepancies between the ideal and actual states. This unique view allowed policymakers to see how current policy was addressing the needs of patients. The journey map used patient experiences and pain points to highlight discrepancies and opportunities to improve existing policies or implement new, data-driven solutions.
Once we had a draft we felt represented the experiences of the folks we interviewed, we re-engaged them for their input. We provided our draft versions of the actual journey and ideal journey maps to our participants and invited them to critique the maps in the ways most accessible to them. Participants were invited to give us their feedback via their preferred communication channel: another series of 1:1 interviews, online workshops with multiple participants, and or print-ready versions of the maps so they could print, mark up and send back to us. We took all feedback into consideration and revised the maps until it was all incorporated into the journeys. The resulting ideal and actual maps were a collaboration between Coforma and the community we were serving.
Simplified Ideal Journey Maps
Conclusion
Journey mapping is a powerful tool for engaging and understanding healthcare project stakeholders. As part of an engagement plan, journey maps capture diverse perspectives and empower individuals to actively participate in the decision-making process. They also allow project teams to clarify and align on what they are building and offer potential cost savings by ensuring a team is focused on the right solution.
Journey maps are also effective tools for community engagement and policymaking. Capturing the experiences, challenges, supportive points, and pain points as individuals or communities navigate the healthcare system allows for patient voices to be included in policy decisions and can help create a system that addresses the actual needs of patients and gaps in care. In policymaking, journey maps inform the design, implementation, and evaluation of improved policies that are inclusive and aligned with patient needs, compared to existing policies.
By utilizing journey mapping in healthcare projects and integrating them into policy development, healthcare-based solutions and policies can be more human-centered and data-driven, which will ultimately lead to improved health outcomes.
If you enjoyed this blog post and would like to download our comprehensive white paper, Using Journey Maps to Better Understand Healthcare Project Stakeholders, visit our resources page.