LymeDisease.org fights to make the patient voice stronger, to support science-based advocacy, to bring about legislative change, and to create a future where Lyme patients can receive the treatments they need to get well. LymeDisease.org empowers individual patients by educating them, amplifying their collective voice, and providing research tools like our published big data surveys and the MyLymeData patient registry. We believe that there is strength in numbers.
We were founded in 1989 as a small grass-roots organization in Ukiah, California. Today, we are one of the most trusted sources of information by patients – annually reaching over 4 million unique visitors on our website. Over 10 years ago, we started collecting and publishing patient data through surveys of thousands of patients. Today, our big data project, MyLymeData, is the largest study of Lyme disease ever conducted. The National Science Foundation has granted $800,000 to academic researchers at UCLA and Claremont McKenna to explore big data techniques using data from the registry. When legislation to form the federal Tick-Borne Disease Working Group was being enacted, over 14,000 Lyme patients used our legislative tools to close the vote within a matter of days.
Our advocacy efforts seek to increase patient access to care and influence public policy to improve quality of life for those with Lyme disease. We also seek to increase patient participation in all aspects of healthcare policy- making, by providing direct involvement in research grant selection, guideline development, legislation seeking to protect physicians and give them the freedom to treat Lyme patients, and to secure healthcare coverage. We educate and empower patients to take effective political action in their communities. We work with local advocates to help provide them with the tools they need for their long-term legislation efforts to succeed. For example, using our Voter Voice platform, citizens of Massachusetts sent thousands of messages to lawmakers in support of a Lyme-related insurance bill in their state. That important bill became law in August 2016. We also promote grass-roots efforts through our nationwide network of state-based internet groups.
LymeDisease.org has funded research to develop better diagnostic tests and to find a cure. Most of this funding has supported academic research projects at Stony Brook University (NY), the University of California at Davis, Stanford University, Johns Hopkins University, and the University of New Haven (CT). In 2015, it became clear to us that the Lyme community needed to do more than fund individual projects. We needed to increase the scope and accelerate the rate of research in the community by building a robust research engine – MyLymeData.
MyLymeData is a patient-powered registry and research platform. It is an observational data study that allows patients to pool their individual health data to help drive research towards a cure. As a research platform, it is designed to help researchers test hypotheses, recruit patients, and conduct long-term follow-up after a trial is conducted. Over 9,700 patients have enrolled in the registry, which has collected over 2 million data points and is among the top 5% of patient-led registries in the nation.
MyLymeData works in collaboration with researchers, including academic researchers examining big data analysis using the registry data. Recently, the National Science Foundation granted a three-year $800,000 award to an academic research team from UCLA and Claremont McKenna to develop artificial intelligence techniques using information from MyLymeData. MyLymeData builds off of LymeDisease.org’s ten years of patient engagement and big data survey studies. Two of our large-scale surveys, on access to care and quality of life, were published in peer-reviewed healthcare journals, working with researchers at Stanford and Carnegie Mellon.
We educate patients, physicians, and policymakers with our highly informative website. Additional content is widely distributed via blogs, social media, and our quarterly journal, the Lyme Times. The Lyme Times provides the best in features, news and commentaries, written by leading Lyme-literate physicians, esteemed scientists, and patient advocates. The journal explores a broad range of topics including treatment options, diagnostic testing, children and tick-borne diseases, disability coverage, insurance challenges and patient data analysis. In addition, members of our board have published over 50 peer-reviewed publications.