A year ago, the U.S. Department of Health and Human Services (HHS) and the Steven & Alexandra Cohen Foundation launched the $25 million LymeX Innovation Accelerator (LymeX) partnership. As this historic association celebrates its achievements with a LymeX first anniversary videoLet’s see how LymeX is carrying momentum forward.
Lyme disease is complexwith approximately 476,000 cases in the US. every year. It’s time to learn from the millions of people who have lived experiences and bring patient-driven innovation and research to the forefront of Lyme disease.
In the words of Admiral Rachel L. Levine, MD, from the June 2021 Congressional Lyme Virtual Series: “My office is embracing transformative innovation, working in a big way with the entire Biden administration to accelerate scientific advances in innovation with cross-cutting collaborations and partnerships. LymeX’s public-private partnership includes Lyme patients at every step.
LymeX Priorities for 2021
Our path forward involves a people-centered approach to engage diverse voices across sectors and disciplines. From this foundation of people- and patient-centered methodologies, three priority themes emerged: (1) Patient-centered innovations; (2) Education and Awareness; and (3) Next generation diagnostics.
Trust is essential to move forward. LymeX includes constantly “showing up” to listen, learn, and create a safe space to focus on the next generation of solutions.
LymeX also uses “open innovation” for open two-way communication, such as LymeX.crowdicity.com crowdsourcing platform, to learn from the public in a transparent and community-driven way.
LymeX 2021 Highlights
Based on people-centered innovation, LymeX 2021 achievements include:
LymeX Human-Centered Design Workshops, Interviews, and Listening Sessions (January 2021 to present): Through a lens of patient-centered innovation, the LymeX Health+ (“health plus”) team completed nearly 700 hours of interviews, listening sessions, and workshops.
LymeX Request for Information (RFI) Accelerating Innovation in Diagnostic Tests for Lyme Disease (February 2021): We published an RFI to understand the current landscape and emerging technologies to improve Lyme disease diagnosis, and received 32 responses from the public on how research and investments in rapidly developing COVID-19 diagnostics they could be adapted or repurposed for Lyme and ticks. transmitted diseases.
LymeX Roundtable: Closing the Trust Gap (April 2021): More than 1,500 viewers watched the LymeX Roundtable Webinar presenting inclusive strategies and emerging technologies for tick-borne diseases. Afterwards, approximately 70 participants (including patients, clinicians, researchers and policymakers) explored ways to improve cooperation and communication around Lyme disease.
Health+ Lyme Disease: Human-Centered Design Report (May 2021): This LymeX Health+ report merges anecdotes and individual perspectives from Lyme patients, transforming them through qualitative and quantitative research into patient “archetypes” and collective “journeys” for diagnosis, treatment, symptoms persistent symptoms and Lyme disability, and identifies opportunities. areas with practical recommendations for the future.
LymeX Roundtable: Summary Report on Bridging the Trust Gap (June 2021) – A neutral, independent organization summarized highlights from the April 2021 LymeX Roundtable and outlined 14 opportunities for a path forward using patient-driven innovation and research.
LymeX Education and Awareness Healthathon (June-August 2021) – This LymeX Healthathon (similar to a hackathon, but like a health-focused sprint) asked the public to create educational materials to raise awareness about tick-borne disease prevention and help others to benefit from the latest scientific findings. . Participants from all walks of life, including two winning K-12 innovators, helped lead by example with Lyme Innovation’s progress.
LymeX Research Workshop: Advancing Research on Lyme and Tick-Borne Diseases (October 2021): Building on the LymeX Roundtable, this workshop invited 50 participants, including 17 Lyme patients and advocates, to share insights on patient-driven research. A neutral independent organization will synthesize the discussions and publish them online by the end of 2021.
LymeX Diagnostics “Moonshot” Awards Contest (in development, more will be announced in late 2021): Through an inter-institutional agreement with the NASA Center of Excellence for Collaborative Innovation, we are designing the first phase of an awards contest called LymeX Diagnostics “Moonshot.” Following the KidneyX As a model, Moonshot will be a multi-phase, multi-year, multi-million dollar competition to develop Food and Drug Administration (FDA)-approved diagnostics to measure active infection of Lyme-causing bacteria in the human body.
To stay informed and participate in upcoming LymeX events, visit Lyme-X.orgcontinue @Lyme_X on Twitter, join LymeX.crowdicity.comor email LymeInnovation@hhs.gov. We look forward to next year!
