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Health+ Lyme Disease

Coforma provided stories, archetypes, journeys, insights, recommendations, and a structure for generating solutions to inform Health and Human Services’ (HHS) overall goal of accelerating the identification of challenges and opportunities to increase the quality of life for people living with Lyme.

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Innovating Patient Care Solutions

US Department of Health and Human Services
Steven & Alexandra Cohen Foundation, LymeX Innovation Accelerator, PISTIS
Delivery Date:
May 31, 2021

Recent estimates from the Centers for Disease Control and Prevention (CDC) suggest that each year approximately 476,000 people may get Lyme disease in the United States.

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.

Reported Cases of Lyme Disease–United States, 2018 | CDC

Reported Cases of Lyme Disease–United States, 2018 | CDC

When the US Department of Health and Human Services saw that the Health+ model could help address this challenge, the Health+ Lyme Disease program cycle was engaged to support 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.

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The Health+ Lyme Disease engagement included the development of the Health+ Lyme Disease Human-Centered Design (HCD) Report, the creation of a four-part animated video series illustrating the archetypes of Lyme, and a solution phase for innovating patient care solutions based on our research.

Patients with persisting Lyme disease often are dismissed by doctors without help, publicly ridiculed and otherwise diminished in news media, and many develop a mysterious, progressively debilitating illness that federal public health agencies have shown little interest in researching. Many patients go bankrupt trying to piece together help for their conditions before they become disabled, and too many end their own lives in desperation .... Patients of no other disease since AIDS have suffered publicly sanctioned derision for seeking help for their serious medical conditions.
David Michael Conner Journalist and Health Writer

The Human-Centered Design Report

We listened to patients, caregivers, leaders, and medical professionals, then created an opportunity to begin addressing their greatest concerns.

We conducted extensive desk research, 47 interviews, and several HCD workshops to surface the problems patients and their caregivers face in getting a diagnosis and treatment for Lyme. We iteratively refined the Lyme archetypes, mapped patients’ diagnostic and treatment journeys, synthesized insights to uncover the opportunities that exist to improve patient experiences, and validated the key issues identified by the Lyme community. This research led to four major opportunity areas for improvement. Review the report here.

PDF download | 21.5 MB

Download the report

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.

Focused Solutions

The HCD Report is being used by HHS, Health+ Lyme’s collaborators, and healthcare innovators to leverage findings within and across areas of expertise to collaboratively and concretely develop new, improved methods of providing healthcare and a health safety net for the Lyme community.

Upon distribution of the HCD Report, an innovation challenge will leverage collaboration, data, and technology to develop new solutions that directly address the challenges and opportunities identified by the HCD Report. These innovation efforts are not restrictive of efforts conducted independent of Health+program activities. With that in mind, it is our hope that others will leverage the report’s insights to create additional solutions that improve the quality of life for individuals living with Lyme disease.

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Diverse Solutions

Individuals and teams will work to develop creative solutions—ranging from marketing needs to policy adjustments to new technology and design prototypes—that directly address challenges surfaced by the research phase.

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Evaluation and Support

Solutions will be evaluated by a panel of professionals across fields and expertise. They’ll then be paired with appropriate implementation means, ranging from formal publication to mentorship to design and development.

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Limitless Innovation

All individuals and groups who utilize our research findings to develop innovative solutions are invited and encouraged to share their progress and achievements with us by emailing us at [email protected].

Press & News

Collaboration is at the heart of Health+. Explore blog posts, videos, and more to learn how our work connects with other efforts to generate patient-centered insights and foster solutions to improve the impact of Lyme.

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