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The Power of Lyme Innovation: One Year of Progress

In November 2018, the HHS Office of the CTO launched its Lyme Innovation initiative to accelerate and co-create the next generation of Lyme disease solutions through public-private partnerships in collaboration with patients, practitioners, researchers, policy makers, and all stakeholders. So, where are we today?

The complex topic of Lyme and tick-borne diseases disease appears more and more in the media, for example, the Lyme & Reason series ― a four-part TV news segment by FOX5, featuring HHS Lyme Innovation and Washington DC updates through October 2019 (20-min video). Lyme disease science and public awareness have improved, yet much work remains. This fast-growing problem continues to take a toll on Lyme patients, their families, and Federal government programs.

Lyme disease is the fastest-growing vector-borne disease in the United States, affecting more than 300,000 Americans each year. Emerging estimates indicate that Lyme disease drains tens of billions of dollars from the U.S. economy each year. An estimated 10-20% of treated Lyme disease patients fail to recover fully and there is no human vaccine. Lyme disease prevention is key.

After one year of HHS Lyme Innovation, what progress have we made?

The U.S. Department of Health and Human Services (HHS) announced its Lyme Innovation initiative in November 2018 in response to the Tick Borne Disease Working Group (TBDWG) 2018 report that recommended increased U.S. government funding, prioritization, and leadership.

Lyme Innovation aims to accelerate innovation in the prevention, diagnosis and treatment of tick-borne diseases through the development of next-gen technologies, interdisciplinary collaborations, and data-driven innovations for tick-borne diseases. "The best ideas and innovation often come from unexpected places," says Dr. Kristen Honey who founded the HHS Lyme Innovation initiative.

CTO Accomplishments in 2019

  • Lyme Innovation Roundtable, December 4, 2018: In this hands-on workshop, participants:
    1. Identified high-value datasets and available resources from all sectors.
    2. Explored public-private partnerships and strategic opportunities across sectors.
  • The Opportunity Project (TOP) Tech Sprint, October 2018 – January 2019: 14-week "TOP Health" tech sprint concluded with 10 teams delivering digital tools — built with Federal data and emerging technologies like AI — to improve clinical trials, experimental therapies, and data-driven solutions for complex challenges from cancer to Lyme and tick-borne diseases. Participating teams included:
    • TickTracker by the LivLyme Foundation in Denver, CO and Columbus, OH.
    • Clyme Health by the California Center for Functional Medicine in the Bay Area, CA.
    • Lyme Tracker App by TrialX and Global Lyme Alliance in New York, NY.
    • TickTickBOOM! Game by the LivLyme Foundation in Denver, CO and Columbus, OH.
  • Artificial Intelligence and Open Data: Lyme Innovation at the White House, February 28, 2019: "TOP Health" teams, which built digital tools from U.S. open data or artificial intelligence (AI) to address Lyme and tick-borne diseases, showcased their results at the White House Eisenhower Executive Office Building in Washington, DC.
  • Lyme Innovation Roundtable Summary Report, May 2019: Download the 41-page Lyme Innovation Roundtable Summary Report, published by the Center for Open Data Enterprise, with highlights, recommendations, and actionable next steps that participants discussed at HHS in December 2018 to harness the power of collaboration, data-driven innovation, and emerging technologies for Lyme and tick-borne diseases.
  • Lyme Innovation at Department of Labor Tech Day, May 16, 2019: Public-private partnerships and two "TOP Health" teams showcased their Lyme Innovation progress at the U.S. Department of Labor's annual demo day in Washington, DC, which was attended by over 3,000 attendees including leadership from Capitol Hill and the White House.
  • Lyme Innovation with the Civic Digital Fellows, Summer 2019: Undergraduate and Master's students contributed to the Lyme Innovation initiative by strengthening collaborations between the HHS Office of the CTO and the HHS Office of the National Coordinator for Health Information Technology (ONC). As part of the Clinical Response through Emerging Technology (CRET) program, fellows helped to develop decision-support software for acute Lyme disease.

Editor's note: For this initiative, the HHS Office of the CTO broadly defines "Lyme" to include acute Lyme disease, chronic Lyme disease, post-treatment Lyme disease syndrome (PTLDS), and other tick-borne diseases that may co-occur with Lyme disease.

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