Lyme Innovation: Real-World Impact
This page documents Lyme Innovation's success story as it continues to unfold. Read on to see how our activities are making a positive real-world impact on Lyme disease and other tick-borne illnesses. Check back often for links to reports, apps, games, blog posts, videos, guides, and other material related to Lyme Innovation's ongoing work.
Technology efforts to address the multifaceted aspects of Lyme disease began to pick up steam in 2015, when patients, entrepreneurs, non-profit leaders, and academics organized a series of Lyme Innovation hackathons and events. These bottom-up efforts created new momentum while welcoming all stakeholders Patients and practitioners worked side-by-side to accelerate innovation in Lyme disease diagnostics, treatment, and information sharing across top-tier universities using open data, open science, open innovation, and open source code.
Meanwhile, within federal government, the 21st Century Cures Act authorized HHS to establish a Tick-Borne Disease Working Group in 2017 (TBDWG). For the first time, the TBDWG brought together federal and public members to review government efforts and scientific research in order to make shared recommendations on how to advance the field. The TBDWG produced its first report with 28 recommendations to the U.S. Congress and HHS Secretary in 2018.
"I want you to know that we, at HHS, hear you. We, at HHS, are listening to your input. We, at HHS, are responding and making Lyme and other tick-borne diseases a priority."— HHS Deputy Secretary Eric Hargan
In response to the 2018 TBDWG report, HHS launched its Lyme Innovation initiative to help connect the bottom-up community needs and momentum with top-down, federal priorities and resources. Transformative change happens when the bottom-up and top-down meet, as this ensures that federal efforts address real-world needs that matter to Americans and their communities. HHS Lyme Innovation became a confluence for all sectors and stakeholders to come together; it became a tool for participating in, boosting, and supporting patient-centered, data-driven approaches to Lyme disease. The HHS Lyme Innovation initiative augments and amplifies the early momentum of community-based innovation efforts by leveraging federal resources and reach—while seeing patients and citizens as driving forces of practical innovation.
The first-ever Lyme Innovation Roundtable at HHS convened leaders and experts in government, industry, academia, research, patient advocacy, nonprofits, and philanthropy to harness the power of collaboration, data-driven innovation, and new technologies in addressing tick-borne diseases. Hosted by HHS with external groups across sectors, the event facilitated information-sharing and feedback from stakeholders including patients, advocates, providers, clinicians, researchers, and policy makers. Following the Roundtable, HHS published a summary report with actionable recommendations for the Lyme disease community.
The TOP Health tech sprint gave participants 14 weeks to tackle health-related challenges by applying curated federal data sets and emerging technologies. This sprint pilot showcased how industry teams and innovators of all ages can create new digital tools and real-world value from federal open data. TOP Health Challenge #2 asked, "How can we address Lyme and other tick-borne diseases through emerging technologies by coupling the power of the crowd and patient insights with data?" Teams created digital tools and information-sharing supports for data-driven public health decisions and improvements related to tick-borne disease. The sprint resulted in these tangible innovations:
- CURA Patient for Lyme Disease (formerly Clyme Health app) Artificial intelligence (AI) ecosystem for managing symptoms, customizing treatment plans, and helping patients follow individualized protocols (won the TOP Prize Challenge).
Using both natural language processing (NLP) and AI-vision technology, CURA Patient helps doctors and patients identify and document symptoms. Its AI-driven virtual assistant helps doctors customize treatment protocols and patients follow their unique treatment plans for complex chronic conditions like Lyme disease. CURA Patient is being piloted at the U.S. Department of Veterans Affairs.
- Lyme Symptom Tracker app (free) Helps patients track symptoms, securely share with care providers, and find clinical studies.
Developed by Global Lyme Alliance and TrialX during the HHS TOP Health tech sprint, the app uses patient-centric data in several ways to help with Lyme Disease. It helps patients easily track their daily symptoms and securely share with their healthcare provider. In addition, it uses data platforms to help connect users with relevant and nearby clinical studies. The data collected provides valuable insight into disease trends and statistics. (Available for Android and Apple devices)
- TickTickBOOM! Learning game to protect against ticks made by and for middle schoolers.
The full TickTickBOOM! video game is in development and on track for free, public release in app stores in late 2020.
- TickTracker app Real-time geolocation tool showing tick distribution to reduce tick exposure.
Currently, the TickTracker app is available in app stores for free for download. Under development is a version of the app that incorporates first-of-its-kind tick-recognition AI; it is expected to go public with beta testing in late 2020.
AI and Open Data: Lyme Innovation at the White House and TOP Demo Day (March 2019)
TOP Health tech sprint teams presented outcomes at the White House Eisenhower Executive Office at the "Artificial Intelligence and Open Data Innovation for Health" event. The next day, they presented their digital tools on the main stage of TOP Demo Day 2019 at the U.S. Census Bureau.
Lyme Innovation at Department of Labor Tech Day (May 2019)
In partnership with the White House's Office of Science and Technology Policy and Chief Information Officer Council, the Department of Labor hosted its second annual Tech Day in May 2019 with the theme "Unleashing the Digital Workforce," aimed toward understanding how technology can help the federal government do mission-critical work. Presentations highlighted Lyme Innovation's leveraging of new technologies, such as use of artificial intelligence in tracking patient symptoms; predictive analytics in forecasting and preparing for outbreaks; and crowdsourcing for timely, effective tick tracking.
Lyme Innovation with the Civic Digital Fellows (Summer 2019)
HHS hosted a cohort of Civic Digital Fellows who worked on projects using data, user experience, emerging technologies, and innovation. The cohort, part of 55 fellows participating in the competitive fellowship program, contributed to a range of HHS projects, including Lyme Innovation. At Demo Day in August, cohort members demonstrated how their projects could help improve government through technology, innovation, and design thinking. One project used natural language processing to evaluate written public comments submitted to the TBDWG; another helped develop an acute Lyme disease use-case for the "All Hazards" clinical decision-support software.
"Lyme is a frustrating and debilitating disease, but it's a problem we can solve."
- Anonymous Lyme patient advocate
Lyme Innovation on Capitol Hill (February 2020) and Beyond
Lyme Innovation is garnering increasingly widespread recognition for fostering cutting-edge solutions and increasing positive outcomes. In February 2020, non-profit organizations honored members of Congress and HHS staff for their strong support of efforts to address Lyme and other tick-borne diseases. Lyme Innovation took center stage, with several of the initiative's leaders receiving awards for outstanding efforts in advancing tools, technologies, and information-sharing resources relevant to these illnesses.
To accelerate progress and strategically advance tick-borne-disease solutions for Lyme in 2020, HHS and the Steven & Alexandra Cohen Foundation partnered to launch the LymeX Innovation Accelerator (LymeX). This LymeX partnership is designed to supercharge our collective impact. HHS also increased its funding for Lyme and tick-borne diseases, and Lyme Innovation will continue to carry forward the momentum of The Kay Hagan Tick Act (part of the fiscal year 2020 Appropriations Bill) with a focus on collaborative, patient-centered innovation.
Check back often for updates on how this initiative is making a real-world impact against tick-borne illnesses.
Blog Posts and Ways to Learn More
For the most up-to-date information, statistics, and guidance on Lyme disease and related illnesses, see the Centers for Disease Control and Prevention's Lyme disease website.
These HHS blog posts offer additional information related to the LymeX partnership, which is one part of the broader Lyme Innovation initiative:
- Introducing Health+: An Iterative Collaboration Tackling High-Impact Health Issues (June 17, 2020)
- The Lyme Innovation "TOP Health" Teams in 2020 (January 22, 2020)
- The Power of Lyme Innovation: One Year of Progress (October 21, 2019)
- Lyme Innovation Roundtable Summary Report (May 2019)
- Lyme Innovation Roundtable Highlights and Next Steps (April 15, 2019)
- Deep Dive on "TOP Health": Data + Technology + Innovation for Lyme Disease (March 19, 2019)
- "TOP Health" Tech Sprint Unleashes the Power of Open Data and AI (January 17, 2019)
- Lyme Innovation Roundtable (December 19, 2018)
- The HHS Office of the CTO Announces a "Lyme Innovation" Initiative (November 20, 2018)
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