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Coforma
Project
Health

Uncovering Lyme Disease Patient Experiences and Opportunities for Improvement

Health+ Lyme Disease informed HHS’ overall goal of accelerating the identification of challenges and opportunities to improve the quality of life for people living with Lyme disease.

The Challenge

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

To help improve the lives of people living with Lyme disease, we sought to understand their patient journey and lived experiences.

People with Lyme disease are often misdiagnosed, overlooked, and not taken seriously due to their wide variety of symptoms, leading to damaging consequences to their health. When the US Department of Health and Human Services saw that Coforma’s 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.

Lyme Medical Test

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
Person sitting on a couch, looking at their phone

Patient Quote

"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."

Person standing in front of a chalk board, holding a coffee

Patient Quote

"I spent the next couple of years trying to figure that out. I was under a lot of stress at work. And so a lot of my symptoms were pawned off to depression or anxiety or stress."

Our Approach

We listened to the Lyme disease community, caregivers, and medical professionals’ experiences, then created recommendations to begin addressing their greatest concerns.

We conducted extensive desk research, interviews, and several human-centered design (HCD) workshops to surface the problems patients and their caregivers face in getting a diagnosis and treatment for Lyme. We synthesized insights to uncover opportunities to improve patient experiences, and we validated the key issues identified by the Lyme community.

Person on a video conference call

HCD Report

The Lyme community’s lived experiences, opportunities to address their greatest concerns, and an outline of recommendations for improvements were surfaced in the HCD Report, a critical aspect of the Health+ program.

Quadrants with four archetypes: Disrupted with Capacity, Disrupted without Capacity, Semi-Disrupted with Capacity, Semi-Disrupted without Capacity

User Archetypes

Archetypes are a distillation of discovery insights meant to describe patient needs, goals, pain points, and habits. Lyme’s wide range of symptoms, unpredictable flare-ups, and overall symptom severity considerably disrupt patients’ lives in various ways. Interrelated to this is their capacity to manage these disruptions in related areas, such as care coordination. Synthesizing user archetypes offers a better understanding of the constraints affecting a patient’s ability to advocate for themselves and the impact Lyme disease has on their life.

Archetype Videos

  • Jess’ Story

    Patient insights can improve diagnostic awareness and innovation. Early diagnosis by a provider could prevent long-term effects.

    Jess was starting an exciting new phase of their life: college graduation and a new career. But this future seemed uncertain when they couldn’t find answers for their brain fog and joint pain.

  • Juan’s Story

    Innovative education opportunities for providers that include patient insights and highlight fact-based resources lead to improved patient experiences and care.

    Juan’s unexplained pain was misdiagnosed, and his care was then overlooked by providers. As the sole provider for his family, he couldn’t afford to leave work to focus on finding someone who could help.

  • Mei’s Story

    Equipping patients with Lyme life planning resources can lead to a stronger safety net for them and their families.

    With an accurate diagnosis, Mei has been able to cope with the debilitating effects of Lyme disease. She has a strong support system, but she needs help navigating the long-term impacts so she can start planning her life instead of planning her life around Lyme.

  • Nina’s Story

    Increasing awareness and education around Lyme diagnostics and patient support can help breakdown medical silos and improve care management.

    Despite an accurate diagnosis with early treatment, Nina is still searching for the right help and care, as well as relief from her continued and worsening symptoms.

Flowchart of the steps in a user's journey finding treatment

Patient Journeys

Through a combination of interviews and research, we developed a visual representation of the patient’s experience from beginning to end. Each step is a crucial and influential moment in their overall journey with Lyme disease, and highlights the challenges or pain points that pose obstacles to their care and treatment.

Tree with hiking marker on it

Opportunity Areas and Recommendations

Opportunity areas were identified wherever the Lyme community noted pain points in their experiences with Lyme. We presented corresponding recommendations that provided ideas for improving and enhancing the patient experience at clinician touch points and other intersections of patient care and well-being.

Project Team

  • Ashleigh Axios Ashleigh Axios HCD Project Delivery Lead
  • Monica Bassi Monica Bassi Project Manager
  • Angela Hopkins Angela Hopkins Communications Lead
  • Madison Hamel Madison Hamel Research Analyst
  • Michelle Shen Michelle Shen Research Analyst
  • Kate Murphy Kate Murphy Designer
  • James Hobbs James Hobbs Designer

Technology

  • Asana for tasks, task prioritization, and due dates
  • Zoom for communications with client and interviews
  • Slack for continuous asynchronous communication
  • Google Drive to maintain a shared, organized folder to house final files
  • Figma, Photoshop, and Illustrator to create design artifacts
  • InDesign to create the human-centered design report
  • Dovetail for research data synthesis
  • HelloSign for collecting signatures of Healthathon participants

Practices

  • Human-centered design research and workshops
  • One-on-one patient, caregiver, clinician, and Lyme leader virtual interviews