LymeX: Applying Health+ for Patient-Powered Innovations

By Alex Wilson M. Eng., IT Specialist, Office of the Assistant Secretary for Health (OASH),
Leith States M.D., MPH., Acting Director, Office of Science and Medicine, & Kristen Honey PhD, PMP, Chief Data Scientist; Senior Advisor to the Assistant Secretary for Health, HHS
Twitter: @HHSGov

Innovation can be a vague term. In the context of Lyme disease, one may ask, “what does innovation mean?” As part of the LymeX Innovation Accelerator (LymeX), HHS is applying an established innovation approach to bring together diverse stakeholders and advance Lyme and tick-borne disease solutions.

Through Health+ (health plus), LymeX is listening and learning from individuals living with Lyme disease and the latest scientific guidance to facilitate patient-centered innovations and improve health outcomes.

What is Health+ and how does it work?

Health+ is a series of ongoing research and rapid prototyping cycles applied to specific, high-impact health issues. Each cycle begins with putting people first by conducting interviews, focus groups and listening to the challenges they face. From the input of diverse stakeholders, we then identify common themes that intersect with federal government levers of influence. Then we frame those themes into opportunities to improve the patient experience. The process culminates in a “healthathon” innovation contest to apply human-centered, data-driven solutions to improve care. The Health+ model previously used for sickle cell disease had great success fostering technology and policy recommendations for care. HHS is taking the model with those learnings and applying it to Lyme disease in three major phases over the next several months.

Phase 1: Design, Discovery, and Definition

Through our research, we are in the process of developing a deep understanding of Lyme disease from critical stakeholders, including individuals with Lyme disease, clinicians, executive leadership, intra-agency partnerships, and our LymeX partner, the Steven & Alexandra Cohen Foundation. Human-centered design methods that engage and build trust with the Lyme and tick-borne disease community are central to this phase. By participating in listening sessions, conducting small-group workshops, and learning from individual interviews, we perform problem validation with stakeholders and identify salient user stories.

Next, we are synthesizing our learnings into patient archetypes (describing groups facing similar challenges that intersect with federal government levers of influence), journey maps (which visually illustrate the complex journeys of people involved at every step), and stakeholder-informed, prioritized opportunity areas. With opportunities in hand, we will publish and promote a LymeX Human-Centered Design report. Our discoveries will inform how we proceed with a LymeX Roundtable event with diverse stakeholders, Bridging the Trust Gap for Lyme Disease. The roundtable is crucial to discover how we will match emerging themes to agreed-upon facts, recommendations, and scientific guidance. The artifacts we develop will enable a product team to execute different strategies during the rapid prototyping phase.

Phase 2: Rapid Prototyping: LymeX Healthathon for Education and Prevention

This phase includes convening individuals with Lyme disease, policymakers, and subject matter experts across academia, nonprofits, industry, and government in a LymeX Healthathon event. The LymeX Healthathon is an innovation sprint that will take place over several weeks following Lyme Disease Awareness Month. The Healthathon will invite the public to form teams and respond to prompts to raise awareness Lyme disease risk and prevention. The Healthathon teams will then utilize research findings, facts, design, and technology to prototype creative solutions. This could include an innovative marketing campaign to draw attention to the known risks of Lyme disease and the best way to prevent tick bites, or a unique technical solution to educate Americans on the latest science on Lyme from the Centers for Disease Control and Prevention.

Phase 3: Transition

The LymeX Healthathon outcomes will include prototypes and solutions that positively affect individuals living with Lyme disease. Following the conclusion of the LymeX Healthathon, HHS will work closely with innovators to connect them to future opportunities so that we can continue driving innovation forward.

None of this would be possible without listening and learning from people with lived experience with Lyme disease. The LymeX team is excited to be incorporating Health+, a model that truly works, and involves everyone. To get involved, join the online community. We welcome everyone to follow @Lyme_X on Twitter and consider joining our LymeX Roundtable, Bridging the Trust Gap for Lyme Disease.

This article was originally published on the HHS blog and is republished here with permission.