Health+ Lyme Disease Human-Centered Design Report Articulates Four Patient Archetypes
Lyme archetypes are a major component of the Health+ Lyme Disease Human-Centered Design (HCD) Report, created by Coforma. These archetypes articulate the array of healthcare experiences and personal impact people living with Lyme disease face.
Health+ Lyme Disease Project Background and Approach
Lyme disease is the most common vector-borne disease in the US. Due to a wide variety of symptoms, people with Lyme disease today are often misdiagnosed, overlooked, and not taken seriously, leading to damaging consequences to their health.
Through research with Lyme patients, caregivers, leaders, and medical professionals, Health+ Lyme Disease identifies pressing health challenges patients face throughout their journey with Lyme disease and responds to those insights by accelerating innovative solutions to increase the quality of life for individuals with Lyme disease.
Research for the Human-Centered Design Report included comprehensive recruitment across various demographics, such as age and gender. We also recruited across different geographic locations, including all states in the New England and Great Lakes regions, as well as northern California. The team conducted 53 hours of interviews, 7.5 hours of workshops, read numerous articles and listened to many podcast series to gain a thorough understanding of the Lyme landscape. After research was validated with a roundtable of subject matter experts, the team synthesized the findings into patient archetypes, journey maps, opportunity areas, and recommendations.
How the Archetypes Were Developed
Through the distillation of the discovery process, we developed four archetypes representing Lyme patient experiences that surfaced via interviews and workshops. We did this by looking over an array of qualitative data to discover similarities and patterns we saw in the patients’ barriers, needs, and actions.
Lyme’s wide range of symptoms, unpredictable flare-ups, and overall symptom severity considerably disrupt the patients’ lives in various ways, including caregiving responsibilities. A patient explained how the unpredictability impacted their plans: “I don’t know what I’m going to feel like day-to-day. And it’s tough to plan for anything.” Because Lyme derails people’s lives so profoundly, Lyme’s level of disruption became the first variable we selected to help group the patients into archetypes. The factors of this disruption include, but are not limited to, symptom unpredictability, enrollment in school, provisions to take leave from work, and engagement in future family and financial planning.
While the level of disruption varies from case to case, this variable splits into “Fully Disrupted” and “Semi-Disrupted” to form distinct archetypes. Fully disrupted includes the range of patients and caregivers for whom Lyme results in forgoing their lives and sense of “normalcy” altogether to manage their or their loved one’s severe condition. Semi-disrupted includes the range of patients and caregivers whose lives are adaptable to their or their loved one’s mild to moderate condition.
The second variable used to form the archetype groups was the patients’ capacity to manage Lyme’s disruptions in their lives. Capacity deals with the constraints they face in coordinating their care, including, but not limited to, their physical and mental state as a result of their symptoms’ impact and the financial and social support they have access to. One patient described their financial capacity as: “I spent thousands and thousands and thousands of dollars on medical bills. I luckily do have that money, but many people with Lyme disease are not financially independent or have a family member or someone that can help pay for these treatments. I have a friend that ended up becoming homeless, trying to pay for Lyme disease treatments.” These constraints affect patients’ ability to advocate for themselves and to balance their Lyme with competing responsibilities.
For the archetype grouping, the level of capacity also splits people into two groups: “With Capacity” and “Without Capacity.” The “With Capacity” grouping covers the range of patients and caregivers that have the ability to pay for expensive treatments, the time to manage Lyme, and the mental and physical condition to self-advocate for their treatment. In comparison, the “Without Capacity” grouping covers the range of patients and caregivers who may not have the flexibility and/or time to manage their condition to the extent needed. They may also be impacted so severely by their condition that they can no longer independently care for themselves.
While capacity and disruption are interrelated, capacity refers to people’s empowerment to manage their condition, and disruption deals with the extent to which Lyme interrupts their daily life and responsibilities. From these two variables, we formed a matrix that split the archetypes into four groups: Disrupted with Capacity, Semi-Disrupted with Capacity, Disrupted Without Capacity, and Semi-Disrupted Without Capacity.
Disrupted with Capacity
The Disrupted with Capacity archetype is somewhat equipped to manage Lyme’s severe impact on their occupation/education, community, and well-being. They have the finances, networks, and/or community support necessary to reorient their lives around their Lyme-related disruptions. This allows them to find new resources and information on Lyme, secure additional social support, take a proactive role in their treatment, and even readjust their source(s) of income.
Due to the capacity they have remaining to manage the disruptions of Lyme and its coinfections, they often take on the role of an informed influencer who speaks to what’s happening within their lives and supports others in navigating their journeys with Lyme. Because the range of information regarding Lyme treatment and their financial and personal support system allows them to explore options, it can sometimes be challenging for this group to filter out what information is directly relevant to their needs.
Key Opportunity Area
There’s an opportunity to support this group by providing guidance when planning for their future and deciding their medical treatment. This group also needs a supportive community to share and collaborate with other Lyme patients and caregivers.
Semi-Disrupted with Capacity
The Semi-Disrupted with Capacity archetype can manage Lyme’s impact while actively pursuing an occupation and/or education with an optimistic view of their future plans. Their ability to meet those demands derives from their access to resources and support potentially provided by family, community, and organizations. They proactively collaborate with their team of doctors and play a significant role in driving their care plan. However, Lyme’s unpredictable disruption to their busy schedule may throw them off track and cause them to need adaptable occupational accommodations from time to time.
Key Opportunity Area
There’s an opportunity to support this group by creating adaptive occupation and education environments that allow them to fully participate while managing their unpredictable symptom flare-ups. This archetype also may need guidance for their condition and its impacts on their future plans and health.
Disrupted Without Capacity
The Disrupted Without Capacity archetype experiences the full gravity of their symptom severity across all facets of life, and they cannot always independently coordinate their care. Therefore, they depend on their caregivers to help them advocate for their diagnostic and care coordination. Their disrupted and constrained capacity can leave them vulnerable to medical discrimination and sometimes medical abuse, as they depend heavily on their caregiver to advocate on their behalf.
Key Opportunity Area
There’s an opportunity to support this archetype, providing them with advocates and caregivers to help them navigate the difficulties of their severe condition.
Semi-Disrupted Without Capacity
The Semi-Disrupted Without Capacity archetype experiences Lyme’s impact while balancing the demands of providing for themselves and their loved ones. Their time is an in-demand resource that is continually in low supply. One patient notes his struggle to balance the amount of time he feels well with the demands of life, family, and work: “You know if you have four hours where you feel well enough to be with the world and that’s it, how do you portion that? How do you have a job and make a living? How do you have a marriage? How do you be a father? How do you be a son?”
The pressure to perform as a full-time employee and provider emotionally and physically constrains them, preventing them from taking a proactive role in their care. The pressure to perform also forces them to mask their symptoms from their coworkers, community, and family, further isolating them and potentially worsening their symptoms.
Key Opportunity Area
There’s an opportunity to support this archetype, providing them with resources to help with childcare, medical bills, and their occupation/education.
Next Steps for the Archetypes
It is our hope and intention that the archetypes identified in the Health+ Human-Centered Design Report are utilized to improve the lived experiences of patients and caregivers dealing with Lyme. By meeting the patients and caregivers where they are, we can solve their immediate needs and goals.
About Health+ Lyme Disease
The Health+ Lyme Disease program cycle is supporting the LymeX Innovation Accelerator (LymeX), a $25 million public-private partnership between the Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation. Coforma facilitates the Health+ Lyme Disease program, collaborating with HHS, PISTIS, CODE, and Ensemble to engage stakeholders, end users, and cross-discipline SMEs to execute the program’s component areas.
Since October 2020, Health+ Lyme Disease has leveraged Coforma’s Health+ model to harness the power of human-centered design and research methods, drive innovation informed by data, and utilize technology to build a stronger health safety net for people affected by Lyme.
The Health+ Lyme Disease Human-Centered Design (HCD) Report articulates diverse patient experiences from diagnosis through treatment. The report’s findings are presented as in-depth patient archetypes, journeys, opportunities, and recommendations that can be used to improve the lives of those living with Lyme.
About Coforma
Coforma works with the government and private sector to craft creative digital solutions and build technology products that improve people’s lives. We’ve honed a modern, agile, user-centered approach that elevates human needs through thoughtfully-designed systems and products. We’re dedicated to reshaping the way communities access and utilize technology products. Together.
Visit us at coforma.io.
