Deep Dive: Using Data Technology + Innovation for Lyme Disease

Addressing Lyme and tick-borne disease by coupling the power of the crowd and patient insights with data.
Mar 18, 2019

After a 14-week “TOP Health” technology sprint, four of 11 teams delivered digital tools that utilized federal open data or artificial intelligence (AI) to address Lyme and tick-borne diseases. These teams’ results were showcased over two days of events at the White House Eisenhower Executive Office Building and at the Census Bureau as part of “The Opportunity Project” (TOP) Demo Day 2019.

NOTE: This blog emphasizes outcomes by the TOP Health Lyme teams. It is part 2 in our “Deep Dive” series with part 1 summarizing the seven TOP Health teams that developed products for the AI ecosystem.

Eleven teams that participated in The Opportunity Project (TOP) Health sprint — a 14-week technology sprint — showcased their outcomes at an “Artificial Intelligence and Open Data Innovation for Health - 403 kb PDF” event at the White House Eisenhower Executive Office Building (EEOB) on February 28, 2019 (see agenda - 825 kb PDF). On the following day, two teams — one from the AI ecosystem track and one from the Lyme disease track — presented on the main stage of TOP Demo Day 2019, where all 11 TOP Health teams demonstrate their digital tools at the U.S. Census Bureau (see press release and agenda - 3.1 MB PDF). These two days unveiled how industry teams and innovators can create new digital tools and real-world value from federal open data, available on Data.gov and Healthdata.gov.

When the TOP Health tech sprint began in October 2018, we welcomed innovators and problem solvers from all walks of life to join us. When different groups connect and disciplines cross-pollinate, new insights arise. Innovations often come from unexpected places — yet even the U.S. Department of Health and Human Services (HHS) was surprised when K-12 STEM innovators joined our TOP Health sprint.

To quote Alan Turing, “Sometimes it is the people no one can imagine anything of who do the things no one can imagine.”

TOP Health Challenges

The TOP Health sprint featured two challenges, one on AI for clinical trials and one on Lyme and tick-borne diseases. Read about the TOP Health Challenge # 1 results on AI in part 1 of this two-part “Deep Dive” blog series. Both challenges connected federal datasets and data stewards with emerging technologies and ideas and from highly motivated, non-government innovators to solve real-world challenges. Each TOP Health team and its digital tool had to:

1. Use government data by incorporating or referencing any one (or more) of the 300,000+ datasets and resources on Data.gov and HealthData.gov.

2. Involve “users” by engaging with patients, practitioners, and/or other stakeholders in the creation of the digital tool (e.g., user-centered methodologies and iterations).

**3. Launch a new tool or add new features/functionality **during the approximately 3-month duration of the TOP Health tech sprint.

The TOP Health Challenge # 2 asked: “How can we address Lyme and tick-borne disease through emerging technologies by coupling the power of the crowd and patient insights with data?”

Why Lyme disease?

Lyme disease, a tick-borne bacterial infection, is a public health priority infecting over 300,000 people in the United States each year. Domestically, it is a common vector-borne disease and the problem is growing in magnitude and geographic region. Societal costs of Lyme disease diagnostic testing in the United States — just testing for the disease, not treatment — are estimated at $492 million each year. Additional research is needed to fully characterize the economic and social costs of Lyme and tick-borne diseases.

The HHS Office of the Chief Technology Officer (CTO) is working at the intersection of data, innovation, emerging technologies, and public-private collaborations to catalyze new solutions with the U.S. Centers for Disease Control and Prevention (CDC), National Institutes of Health (NIH), and other HHS offices. This TOP Health sprint fits within the broader “Lyme Innovation” initiative of the HHS Office of the CTO, which aims to co-create the next generation of tick-borne disease solutions with patients and practitioners as partners. Specifically for this TOP Health Challenge # 2 on Lyme and tick-borne diseases, we encouraged teams to explore any and all ideas — as long as they met the three eligibility criteria (above). The list below summarizes the four Lyme disease teams, each of which met the TOP Health criteria and delivered new digital tools or functionality between October 2018 and January 2019.

TOP HEALTH CHALLENGE # 2: LYME AND TICK-BORNE DISEASE TEAMS

Co-creating solutions with patients and practitioners as partners in data-driven innovation:

  1. LivLyme Foundation TickTracker App —
    In Denver, CO and Columbus, OH
    TickTracker is a free global app created by a 13-year-old girl who started the Lyme Foundation. This app uses geolocation to let users track and report ticks in real-time so that people in the United States and around the world can stay safe.
  2. LivLyme Foundation TickTickBOOM! Game —
    In Denver, CO and Columbus, OH
    TickTickBOOM! Game is a free mobile app created by twin 11-year-old boys that is an “edutainment” [educational entertainment]-based game targeted towards teaching our nation’s youth about tick awareness and, ultimately, [Lyme disease] prevention.
  3. California Center for Functional Medicine Clyme Health —
    In San Francisco Bay Area, California
    The Clyme Health app optimizes data gathering and visualization for patients with complex, chronic conditions so that care providers and researchers can better measure the efficacy of treatments and, together, identify data-driven solutions and personalized medicine.
  4. TrialX and Global Lyme Alliance Lyme Tracker App —
    In New York, NY
    Tracking Lyme disease symptoms is critical for people living with Lyme disease; patients and physicians rely on this data to understand disease progression and manage individual symptoms. The Lyme Tracker App will enable patients to easily track symptoms and physical activity so as to provide ongoing data to further advance clinical research in this space.

Lyme Disease Innovation

What we couldn’t imagine with TOP Health was that K-12 STEM innovators would join our technology sprint — and dazzle the U.S. Department of Health and Human Services (HHS), the Presidential Innovation Fellows Program, and leadership from across federal government. “These young people were very impressive” said Ed Simcox, HHS Chief Technology Officer, “When it comes to a ‘wicked problem’ such as Lyme disease, we want to encourage innovation from any source. Young people are stepping up to the challenge.”

This next generation of technologists included innovators in middle school, such as Olivia Goodreau who recently turned 14-years old and lives in Colorado. Olivia was one of our young TOP Health participants, but not the youngest. Her brothers, Jack and Will Goodreau —11-year-old twin boys — also participated in the TOP Health sprint. From Ohio, the Stauffer family with siblings Anna, Benjamin, and Noah — ages 15, 14, and 12 — contributed. Of the four teams that satisfied TOP Health criteria and delivered digital tools for Lyme and tick-borne diseases, two teams were led by middle school students in STEM. These young innovators developed:

TickTracker App, which you can download today for free on Android and Apple devices, uses real-time geolocation and amalgamates data from the CDC, U.S. Department of Agriculture, the Smithsonian Institution, other federal agencies, and non-government data. The LivLyme Foundation created the TickTracker app and used the TOP Health sprint to connect with government data stewards and unlock new datasets to improve the app with new functionality. At the end of the TOP Health sprint, the TickTracker App went live with new data visualizations and heat maps to show the distributions of ticks. Watch the TOP Demo Day video (below) to hear about Olivia’s innovations in her own words.

TickTickBoom! Game by the LivLyme Foundation is the first-ever gamification tool for middle school children to learn how to protect themselves from ticks that may spread diseases like Lyme disease. The TickTickBOOM! game will soon be available for free to download on Android and Apple devices. As the twin inventors, Will and Jack Goodreau said in unison, “Who doesn’t want to blow up ticks?”

Video: Fourteen-year-old Olivia Goodreau from Colorado presents her “TOP Health” innovation: TickTracker App with heat maps by the LivLyme Foundation. Video courtesy of the U.S. Census Bureau:

In addition to these K-12 STEM innovations, two adult-led teams participated in the TOP Health sprint for Lyme disease. These two teams were:

Clyme Health App that provides patient symptom tracking for Lyme disease, inspired by NIH Patient-Reported Outcomes Measurement Information System (PROMIS) data. The Clyme Health tool began as an idea in 2016, originally called “LymeDot”, at a Lyme Innovation Hackathon co-sponsored by the Bay Area Lyme Foundation, MIT Hacking Medicine, and Harvard University’s Dean Center for Tick-Borne Illness. After gaining recognition in the 2016 – 2017 Lyme Innovation Hackathons, the app was acquired by the California Center for Functional Medicine (CCFM) renamed “Clyme Health”. During the TOP Health sprint, CCFM finished the technical development for Clyme Health and linked it to electronic health records (EHRs) for patient and practitioner use. In the words of Dr. Sunjya Schweig, Co-Director of CCFM and the Clyme Health team lead:

“Clyme Health is a new ecosystem for managing Lyme and chronic illness patients, one that is both high-tech and high touch. It leverages symptom tracking, wearable data, easy access for patients to their own data with Blue Button 2.0 interoperability, and marries this with support and coaching to help patients navigate their chronic illness and path to recovery. Our goal is to help patients find treatments that work, help doctors better care for their complex patients, and help researchers identify diagnostic and treatment insights that will help the community at large.”

Lyme Tracker App by the Global Lyme Alliance (GLA) and TrialX launched for public use at the end of the TOP Health sprint. This app aims to help people with Lyme disease track their symptoms and share their data with their healthcare providers. The GLA and TrialX app integrates with TrialX’s iConnect platform, which empowers people to find and connect with a clinical trial investigator or clinical trials near them. Sara Tyghter, GLA Director of Education and Outreach and co-facilitator of the app development in TOP Health, said:

“There is a critical need to take a patient-centric approach to gather population-level data in order to better understand the traits of Lyme disease. Furthermore, such amassed patient data is important to share in an open environment that will give scientists and physicians a means to accelerate their research efforts and ultimately help patients.”

The Clyme Health and Lyme Symptom Tracker apps are not connected, although both tools rest on Blue Button 2.0 standards for data interoperability and portability. These types of tools quantify symptoms and wellness over time, while empowering patients with easy access to their own health data. Patients then choose if and how to share their health data with practitioners, researchers, or third parties.  

Digital tools like those developed through the TOP Health sprint can empower patients to document their experiences with quantitative data points. Individual anecdotes, over time, become big data. Eventually, these data may yield new insights on complex conditions that can inform action.

Co-Creating Solutions and Next Steps

While permanent solutions to today’s Lyme disease challenges take time, these TOP Health digital tools represent one step forward in human-centered discovery and innovation for Lyme disease solutions. Understanding Lyme disease to protect public health and improve patient outcomes is a long-term mission, and it will take all of us, contributing however we can. To assist the research mission, TOP Health engaged new audiences in the near-term of weeks and months. This pilot explored how the trifecta of “data + technology + innovation” may help to address the complexities and uncertainties surrounding tick-borne diseases.

TOP Health demonstrated the value of interdisciplinary teams across sectors — government, industry, philanthropy, non-profit organizations, academia, and K-12 STEM education. There is collective power when diverse groups come together to ideate, test concepts, and rapidly iterate on data-driven prototypes. Participating teams forged new collaborations, strengthened existing relationships, and learned from each other. These collaborations continue today, even beyond the end of the TOP Health sprint. Without ongoing HHS involvement, the TOP Health teams continue to develop and enhance their digital tools showcased at the White House EEOB and the Census Bureau.

One theme that emerged from showcasing TOP Health results is how listening to patients and people is where problem solving begins. Transformative change happens because of people, processes, and technologies — in that order.

The TOP Health process reaffirmed the commitment of the HHS Office of the CTO to co-create solutions with patients and practitioners as partners. We must open our doors and our minds to hear candid feedback from individual stakeholders including patients, advocates, providers, and researchers.

Those who can imagine anything, can create the impossible. – Alan Turing

In our effort to co-create solutions with you, the HHS Office of the CTO will host a number of virtual “Lyme Listening” sessions to receive individual input from stakeholders. All perspectives are welcome. We want your unique input. Whether you are a MD, PhD, policy maker, or have first-hand experience as a patient or caregiver — you are welcome to join us!

The next Lyme Innovation listening session is scheduled for Thursday, April 4th, 4:00 PM ET. To receive an invitation, please email Dr. Kristen Honey.

Additional Information

The 14-week “TOP Health” tech sprint was co-led by the U.S. Department of Health and Human Services (HHS) Office of the Chief Technology Officer (CTO) and the Presidential Innovation Fellows(PIF) program. The PIF program and Dr. Gil Alterovitz led the TOP Health Challenge # 1 on AI. The HHS Office of the CTO and Dr. Kristen Honey led the TOP Health Challenge # 2 on Lyme and tick-borne diseases. For additional details on TOP Health, see our prior HHS CTO and Digital.gov blogs about this data-driven collaboration, participating teams, and resulting digital tools:

NOTE: Some of the documents on this page may not be fully accessible to persons using assistive technology. We are working on remediating these documents and will make them available as soon as possible. For assistance with the information in these files, contact the HHS Office of the Chief Technology Officer at 202.853.7680.

TOP Health was modeled in part after The Opportunity Project (TOP) led by the Census Bureau at U.S. Department of Commerce. The Opportunity Project is a process for engaging government, communities, and the technology industry to create digital tools that address our greatest challenges as a nation.

Mar 18, 2019