Health+ Lyme Disease Human-Centered Design Report Highlights Patient Experiences and Opportunities for Improvement
By Angela Palm and Maddy Hamel
The Health+ Lyme Disease Human-Centered Design (HCD) Report, created by Coforma, 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.
Today’s Lyme Landscape
According to the Centers for Disease Control (CDC), there are 30,000 Lyme disease cases reported annually. They also note that other data collection methods suggest that approximately 476,000 people may get Lyme disease each year in the United States. While commonly referred to as an endemic, Lyme disease has impacted patients in nearly every state, making it the largest vector-borne disease in the US.
Due to a wide variety of symptoms, people with Lyme disease are often misdiagnosed, overlooked, and not taken seriously, leading to damaging consequences to their health. There is growing frustration and mistrust from Lyme sufferers who have had their lives derailed by ineffective or inaccurate, “one size fits all” treatments.
The degree of alarm and confusion about such a long-standing public-health issue has become detrimental to Lyme patients’ outcomes and diagnostics’ progression. This stagnation leaves healthcare professionals with limited resources and tools to accurately diagnose and support patients.
Health+ Lyme Disease Project Background
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 this qualitative data, and utilize technology to build a stronger health safety net for people affected by Lyme.
Through research with patients, caregivers, leaders, and medical professionals, ongoing cross-collaboration between subject matter experts (SMEs), and an innovation challenge, Health+ Lyme Disease identifies pressing health challenges patients face throughout their journey with Lyme disease and responds to those insights by accelerating the implementation of innovative solutions to increase the quality of life for those individuals.
As part of the Health+ Lyme Disease program cycle, the HCD Report serves to surface patient experiences, elevate their stories through accurate and aligned archetypes, and identify the challenges and opportunities intersecting clinical care touch points and elsewhere along the Lyme journey. Coforma listened to the Lyme community’s lived experiences, articulated the opportunities to address their greatest concerns, and outlined recommendations for improvements. The Health+ Lyme Disease Human-Centered Design (HCD) Report details each of these areas in depth.
A LymeX Innovation Accelerator Collaboration
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, all the while engaging stakeholders, end users, and cross-discipline SMEs to execute the program’s component areas.
Our Approach
Beginning in December 2020, our team began its work with desk research, consuming critical papers, studies, and other key publications to develop a comprehensive understanding of Lyme disease.
Next, we utilized human-centered design research methodologies to uncover diverse patient stories and experiences. Research methods included one-on-one interviews, workshops, and diary studies conducted with patients, caregivers, leaders, and medical professionals. We conducted comprehensive recruitment for research participation across a range of demographics, such as age and gender identity. We also recruited across a variety of geographic locations, including all states in the New England and Great Lakes regions, as well as northern California.
Our research team coded the research and synthesized the findings into patient archetypes, journey maps, and opportunity areas. These key findings were then reviewed and validated within remote roundtables with key stakeholder groups who confirmed their accuracy and added additional color. The HCD Report we generated communicates the validated findings, adding the voices of those interviewed, recommendations, and more nuanced user journeys. It’s been prepared for a diverse set of audiences, including government policy makers, Lyme advocacy leaders, clinicians and doctors, Lyme patients, and anyone interested in improving the experience of Lyme patients.
“So seven-and-a-half years to get to diagnosis. And I’m at about seven-and-a-half years of treatment. I went from literally incapacitated, bed bound, housebound, completely dysfunctional … while trying to raise two children.” — Patient
Report Contents
Through our research, the Coforma team developed a solid understanding of shared challenges, key opportunities for change within the patient experience, the trends in the needs and perspectives of Lyme patients and caregivers, and the paths — including hurdles and key decision points — that patients undergo in finding a diagnosis and navigating their care coordination and treatment.
The following report areas synthesize and reflect findings from 698 hours of discovery, including interviews, workshops, extensive desk research, and close collaboration with project contributors.
Archetypes
Archetypes are a distillation of design discovery insights meant to describe user needs, goals, pain points and habits — a communication tool that helps teams build empathy towards end users, and address all use cases. They are developed through analyzing qualitative data, and are useful when different types of users behave differently and their various use cases and needs have to be addressed.
The HCD Report outlines four distinct Lyme archetypes, including:
- Disrupted with Capacity
- Semi-Disrupted with Capacity
- Disrupted Without Capacity
- Semi-Disrupted Without Capacity
Within each archetype, patient experiences with care coordination and the impact Lyme has on their lives are detailed.
Journey Maps
A journey map is a visual representation of the patient’s experience from beginning to end. It documents the steps they take across the course of the experience, the tools and resources they use to complete certain steps, the challenges or pain points that pose obstacles along the way, and the opportunities for enhancing or improving the experience.
With Lyme, we learned that diagnosis is often delayed, causing severe, prolonged symptoms. Because there is a lack of awareness around diagnostics, appropriate Lyme treatment may be delayed, worsening the patient’s condition. To illustrate this reality, we mapped two core journey maps for Lyme patients: the diagnostic and the treatment journey for persistent symptoms. These journeys detail the varied experiences of those with Lyme in their pursuit of diagnosis and treatment.
Opportunity Areas and Recommendation
Opportunity areas were identified wherever patients and other Lyme stakeholders noted experiencing pain points in their relationship to Lyme, including along their diagnostic and treatment journeys. The main opportunity areas we uncovered through our research include:
- Broader awareness of Lyme disease
- An accelerated diagnostic process
- Cohesive and comprehensive care coordination
- Holistic life and care management
Each of these four opportunity areas includes sub-areas that are detailed in the report. Alongside the opportunities are corresponding recommendations that provide ideas for improving the patient experience at clinician touch points and other intersections of patient care and well-being.
How This Report Can Help People
It is our hope and intention that the HCD Report will be used by government stakeholders and healthcare innovators at large to leverage findings within and across areas of expertise to collaboratively and concretely develop new, improved methods of providing healthcare, a health safety net, and an increased quality of life for individuals living with Lyme disease.
To that end, an innovation challenge will leverage collaboration, research findings, and technology to develop new solutions that directly address the challenges and opportunities identified by the HCD Report. Individuals and teams are working to develop creative solutions, ranging from marketing needs, to policy adjustments, to new technology and design prototypes.
Individuals and groups working independently from the Health+ program to develop innovative solutions using the HCD Report’s findings are invited and encouraged to share their progress and achievements with us by emailing us at HealthPlus@coforma.io.
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.
