Fighting Lyme disease: Data-driven solutions to a nationwide challenge

According to an estimate published by the Centers for Disease Control, about 300,000 Americans are infected with Lyme disease every year. The disease, which is transmitted by ticks, can cause a range of symptoms from fever, chills, and muscle pain to pain, arthritis, and severe brain and neurological impacts. But most Americans who have Lyme disease may never know they have it, let alone get effective treatment. Doctors often misdiagnose the symptoms of Lyme disease — patients sometimes see literally dozens of doctors before the true cause of their symptoms is found — and may not know how to treat advanced cases.

Challenges with preventing, diagnosing, and treating Lyme disease are magnified by problems with data availability, quality, and use. People who live in high-risk areas may not have the timely information they need to prevent tick bites. When someone is infected, standard blood tests may miss the disease and give a false negative result. And when a doctor diagnoses a patient who has experienced symptoms for a long time, there may not be enough data available to help determine the best course of treatment.

To help address these issues and encourage new, data-driven approaches to Lyme and other tick-borne diseases, the nonprofit Center for Open Data Enterprise (CODE) facilitated a Lyme Innovation Roundtable at the U.S. Department of Health and Human Services (HHS). CODE worked with the HHS Office of the Chief Technology Officer (CTO) to plan and facilitate the Roundtable, and has now published a report on the results. An important note: This report presents CODE’s synthesis of the work of the Roundtable, and does not represent the views of HHS or any other part of the federal government.

Access the full report here

CODE’s report reflects the input of more than 80 experts who attended from government, industry, academia, clinical research institutions, patient advocacy groups, nonprofits, and philanthropic organizations. Through presentations and breakout discussion sessions, the Roundtable participants described a wide range of strategies to reduce the risk of Lyme disease, diagnose it earlier, and treat it more effectively.

Data-centric approaches could help thousands of people avoid contracting Lyme disease. Government agencies and public health organizations could do much more to educate the public through information and public service campaigns — including cataloging, indexing, and disseminating the information sources that are already available. This public health guidance can include both advice on avoiding tick-infested areas and information on using insect repellents that are most effective against ticks. Beyond providing general information, mobile apps, such as the TickTracker app, can provide warnings about high tick risk in a local area, and gather more data on Lyme and tick-borne diseases from app users.

Roundtable participants had important insights on the dilemmas of Lyme disease diagnosis. Without a “gold standard” for diagnosing Lyme disease — a way to isolate and culture the bacterium that causes Lyme disease — data from blood tests for Lyme disease can be difficult to interpret. Current blood tests often result in false negatives; they may be unable to identify the disease at all stages, for example, and may only be able to detect strains of the disease that exist in the northeastern United States. Given this uncertainty, it could be helpful to provide doctors with more information on the limitations of these tests and exactly what they do and don’t mean. Participants also suggested giving doctors timely information about the risk of Lyme and tick-borne diseases in their specific locations, giving them a context for evaluating their diagnostic results.

Some Roundtable participants focused on the need for more data to improve Lyme disease treatment. Researchers can share more of their data, including both genomic data and data on patients’ symptoms, to improve the scientific understanding of Lyme and tick-borne diseases and possible treatments. Several participants emphasized that patients who volunteer to share data about their own cases should have access to any data that researchers find out about them. Others recommended reinstating a National Guideline Clearinghouse to help doctors review different guidelines that outline different possible approaches to Lyme disease.

Finally, Roundtable participants had cross-cutting recommendations for using data to improve the management of Lyme and tick-borne diseases. In particular, they flagged the need for a national strategy for Lyme and tick-borne disease research, with centralized leadership from a coordinating office within HHS. This strategy could help coordinate work by HHS, the U.S. Department of Energy National Laboratories, the U.S. Department of Defense, and the U.S. Department of Veterans Affairs, as well as partners in academia, industry, and state and local government. This national strategy could leverage existing infrastructure and resources to support coordinated research on many important aspects of Lyme and tick-borne diseases.

The bipartisan Congressional Lyme Disease Caucus gives some hope that Congress may move in this direction soon. The caucus recently introduced legislation to mandate that HHS establish an oversight office and lead a coordinated national strategy. The growing concern over Lyme and tick-borne diseases crosses political lines. As one Roundtable participant put it, “Ticks don’t care if you’re a Republican or Democrat.”

Addressing these complex illnesses will require a new level of collaboration, coordination, and trust between researchers, physicians, patients, and others who have a stake in seeing these diseases effectively treated and eventually eradicated. We hope that the Lyme Innovation Roundtable, and CODE’s report of its findings, will help encourage new work on research, prevention, diagnosis, and treatment.

The Center for Open Data Enterprise (CODE) is an independent nonprofit organization based in Washington, D.C. whose mission is to maximize the value of open government data as a public good. The Lyme Innovation Roundtable was made possible by the HHS Office of the CTO, the Steven & Alexandra Cohen Foundation, the Bay Area Lyme Foundation, Ensemble, and CODE.