Uncovering Lyme Disease Patient Experiences and Opportunities for Improvement

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."

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."

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.

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.

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.

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.