LymeDisease.org

Founded in 1989, the mission of LymeDisease.org is to harness the power of tens of thousands of patients to improve patient care and to accelerate the pace of Lyme disease research. We do this through large-scale science-based advocacy, communications, and patient-driven big data research.
LymeDisease.org is powered by patients. We believe there is strength in numbers. We represent hundreds of thousands of patients and provide them with the tools essential to empowerment. Educated and informed patients are the key to improving health care outcomes. We provide patients with the information that empowers them to make sure that they receive the care they need.
True power comes from having informed patients involved in all levels of decision making—from education, to legislation, and even science. Together we amplify the patient voice to drive health care policy change.
Through the MyLymeData patient registry, we develop the data necessary to better characterize persistent Lyme disease and to evaluate patient outcomes based on the real world care they receive from their clinicians. To receive the care they need to get well, patients must:
• Receive care that is patient-centered and improves their health,
• Know that there are divergent diagnostic and treatment approaches used by different clinicians,
• Have access to providers that can provide quality medical care,
• Be given the information necessary to make informed choices about diagnosis and treatment (including the risks and benefits of different treatment options), and
• Be afforded the opportunity to make informed treatment choices in consultation with their clinicians based on their individual circumstances and treatment preferences (e.g. shared medical decision-making).
To achieve healthcare policy change through advocacy, patients should be involved at all levels of healthcare policy decision making. This includes having a seat at every forum that discusses Lyme disease (nothing about us without us). Beyond this, patient representation must be authentic, meaningful, and accountable to the community. To influence health care policy reform, patients need the healthcare data essential to better characterize Lyme disease (particularly persistent Lyme disease) and the effectiveness of treatment options and their associated side effects.
Accelerating research that is patient-driven requires that:
• Research be based on clinically relevant research populations and use interventions and research outcomes that patients regard as important,
• Patient-generated data be pooled in a patient registry to better characterize the disease, analyze the risks and benefits of available treatment options, and identify how different subgroups of patients respond to treatment,
• Patients assist researcher recruitment efforts for clinical trials,
• Patient organizations collaborate with other organizations to build out a robust research engine that may include biorepositories, clinicians, industry, and researchers

Our strategies for making this happen include:
• developing and sustaining an extensive and robust communications network for patients and clinicians,
• providing comprehensive and trustworthy information to patients that they need to become diagnosed and treated,
• mobilizing tens of thousands of patients in advocacy and patient-driven research,
• advocating for healthcare policy change that will eliminate access to care barriers that patients face, increase research funding, and promote the use of shared medical decision making, and
• accelerating the pace of research through our patient registry and research platform, MyLymeData.

Communications: LymeDisease.org is the largest and most trusted Lyme disease patient communications network in the nation, drawing millions of visitors to its website annually. Our reach to patients is unparalleled, with widely distributed website content, blogs, social and print media, including our digital publication, The Lyme Times.
New patients rely on us to provide information to get promptly diagnosed, tested, and treated. Patients with chronic Lyme disease rely on us for timely, accurate news and commentary through our website, blogs, newsletters, and our online support and discussion forum: U.S. National Lyme Group.
LymeDisease.org provides patients with the tools to get promptly diagnosed and treated. Our Symptom Checklist helps patients determine whether they have been exposed to Lyme disease and assess whether they should see a healthcare practitioner. Millions of people have used the symptom checklist to help obtain an earlier diagnosis. Our physician referral program gives patients information about local physicians who treat Lyme disease.
Advocacy: Our advocacy efforts benefit from the thousands of patients who lend their voices to promote change. Over 14,000 patients answered our call to contact legislators to pass the 21st Century Cures Act that created the Tick-Borne Disease Working Group, where patients for the first time have a seat at the table and discussions that would have occurred behind closed doors are now public.
Representatives from LymeDisease.org have served on Working Group subcommittees since its inception, drafting portions of the report that goes to Congress, testifying at their hearings, nominating patient representatives who are qualified to serve on the Work Group, and informing the patient community regarding the deliberations and resulting outcomes from this group.
Research: Patients are the most underutilized resource in medical research. MyLymeData is a patient-led research registry that uses innovative technology that by-passes traditional research bottlenecks. It allows patients to pool their data to accelerate research using real world evidence.
The registry uses one of the highest quality and most secure registry platforms – the same one that serves National Institutes of Health patient registries.
MyLymeData seeks to:
• generate actionable data and a knowledge base to improve care and promote policy reform,
• build the Lyme community research capacity,
• foster research partnerships and collaborations with researchers, clinicians, and blood/tissue biobanks,
• identify treatment response subgroups and determine the factors that make patients well, and
• facilitate traditional research by helping researchers develop hypotheses, determine outcomes that matter to patients, and recruit patients for clinical trials.
We have enrolled over 14,000 participants, collected over 5 million data points, published five peer-reviewed studies, and seven white papers and scientific posters. MyLymeData has been hig

Communications:
LymeDisease.org is the largest and most trusted communications network for Lyme disease.
• Its website draws millions of visitors each year.
• Its blogs, Twitter, and Facebook postings have a greater engagement than any other Lyme disease patient organization.
• Its weekly newsletter reaches hundreds of thousands of readers each week.
• Its quarterly journal, the Lyme Times, is accessed by thousands of members of the organization.
Advocacy:
Our efforts have supported many legislative efforts on the state and federal level, as well as the creation of the federal Tick-Borne Disease Working Group
Our directors and key members of our team:
• have held key leadership roles at the International Lyme and Associated Diseases Society (ILADS), the national Patient Centered Outcomes Research Institute, Consumers United for Evidence-Based Healthcare (a Cochrane affiliated organization), and the Society to Improve Diagnosis in Medicine,
• have authored one book, two college textbook chapters on patient engagement and patient registries, over 50 peer-reviewed publications (including 5 big data studies), the GRADE based Lyme disease treatment guidelines of the ILADS, and the definition of chronic Lyme disease published by ILADS,
• have served on subcommittees of the federal Tick-Borne Diseases Working Group in each of the sessions conducted to date, the California Lyme Disease Advisory Committee, and as subject matter experts on patient registries for the University of Chicago (NORC) for Patient Centered Research Outcomes Institute,
• served on the executive committee of PCORnet, the big data initiative of the Patient Centered Outcomes Research Institute as well as on the inaugural panel of the Patient Engagement Advisory Panel of PCORI,
• have made over 100 presentations at professional and governmental conferences, including the American Academy for the Advancement of Science, the Cochrane Colloquium, the National Institute of Health Collaboratory, the NIH Science of Team Science, Kaiser Permanente, the Patient Centered Outcomes Research Institute, and its big data initiative PCORnet, and the Association of Health Care Journalists,
• have presented at many patient-oriented conferences throughout the United States.
• have been interviewed or featured by the New York Times, Wall Street Journal, Fox5NY’s special series Lyme and Reason, WBUR public radio in Boston, Outbreak News, the film Under Our Skin Part 2 as well as local newspapers, TV news shows, and independent podcasts.
• participated in the White House Precision Medicine Summit and the Citizen Science Forum and numerous other national and international governmental forums.
MyLymeData Accomplishments
Since its launch in 2015, MyLymeData has:
• enrolled: > 14,000 patients,
• collected over 5 million data points,
• launched new surveys on COVID-19 as well as Stigma, and Patient Representation,
• established 2 long-term academic collaborations (UCLA and University of Washington), and