Making the Invisible Visible with Patient Data

Learning from those directly impacted by chronic Lyme disease

Context: Lyme disease affects a significant and growing population, as ticks expand into new geographic regions in changing climates across the United States. 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. In 2021, US Department of Health and Human Services (HHS) engaged Coforma 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. This partnership aimed at improving diagnosis and quality of life for people living with Lyme disease. That original research produced a report, patient archetypes, and patient journeys that became a reference point across the Lyme community and the broader LymeX partner network.

HHS recently re-engaged Coforma to revisit that research. The update refreshed the original patient journeys and archetypes to reflect how patients' experiences had evolved, and added a new opportunity area addressing an emerging shift in the research and policy landscape: growing recognition that Lyme disease belongs to a broader category of Infection-Associated Chronic Illnesses (IACCI), alongside conditions like Long COVID and ME/CFS, that share overlapping symptoms and, likely, underlying biological pathways.

Role: I was lead researcher and strategist, scoping research questions and study design with the client, synthesizing secondary research including scientific literature and policy reports into updated recommendations, and rewriting the original report to incorporate new material. I worked with a designer to coordinate the report layout and illustrations.

Outcome: A public HHS-sponsored report centering the patient experience, informed by data, and aimed at building a stronger health safety net for people affected by Lyme.

Building a longitudinal view with a tactical update

While HHS had limited budget for this report update, they wanted to incorporate the same human-centered methodology including patient and doctor interviews to see how the landscape of chronic Lyme had shifted since first publication. Our approach to the study design was to reengage the same participants who had invested in the work several years ago, and focus a few targeted conversations with new participants on the diagnostic process only. By building on the rapport we’d already established and talking with folks who’s story we were familiar with, we were able to build a longitudinal view while remaining agile in our approach.

A fifth opportunity area for new research horizons

The original report identified four opportunity areas rooted directly in patient and caregiver experience. We added a fifth, looking outward at the research and policy infrastructure shaping future diagnosis and treatment.

Lyme research has long been hampered by the absence of consensus definitions and objective biomarkers, which has fragmented studies, shrunk trial sizes, and left many patients—particularly those with persistent symptoms—outside the narrow research definitions currently in use. Lyme's recent recognition as one of several related IACCIs (alongside Long COVID and ME/CFS) creates a real opportunity: infrastructure and lessons built for one condition can accelerate progress across all of them.

Our vision, in short: shift more research investment toward alleviating the symptoms patients say matter most, standardize how those symptoms are measured, and build bridges across IACCI research communities rather than treating each condition in isolation.

That translated into a few concrete recommendations:

• Patient-centered outcome measures — standardized, validated tools for tracking symptom severity (e.g., fatigue, brain fog) that reflect lived experience, not just clinical consensus.

• Shared, AI-ready infrastructure across IACCIs — common data elements and biobank standards that let Lyme, Long COVID, and ME/CFS research build on each other instead of starting from scratch. As these registries grow and standardize, AI-assisted analysis becomes a realistic way to put that pooled data to work — surfacing patterns across a heterogeneous patient population, and generating testable hypotheses about disease mechanisms, which would be difficult to find through manual review alone.

• More accessible trial design — decentralized and adaptive trial models that reduce travel burden and open participation to patients whose disability makes traditional trial structures inaccessible.

Impact

This opportunity area was written to challenge how HHS, its research partners, and philanthropic funders prioritize investment. We strategically brought attention to the unglamorous, connective work of consensus definitions, shared data standards, and biobank infrastructure that Lyme, Long COVID, and ME/CFS research can all draw on. That groundwork is what will make possible larger, comparable studies, AI-assisted analysis of pooled data, and trial designs accessible to the patients most affected.

By treating Lyme IACI as part of a shared infrastructure investment rather than an isolated problem, we can enable progress on one condition to accelerate progress on the others.

Below is the original Health+ Lyme Disease Report. The updated report with our new findings is forthcoming.