E22: LymeDisease.Org with Lorraine Johnson

Lorraine Johnson is the CEO and president of Lymedisease.org which is a non for profit organization that was founded in 1989, making it one of the oldest line organizations in the nation. It is also the largest and most trusted Lyme disease patient communication network, known for its extensive blogs and the Lyme Times, which is published quarterly. Lymedisease.org has an extensive grassroots reach and community and harnesses the power of patients using science-based advocacy to create the change necessary to improve patient care. For over 10 years have been involved in patient-led Big Data research efforts conducting large-scale patient surveys that engage thousands of patients, and are published in peer-reviewed journals. In 2015, Lymedisease.org launched in my Lyme data patient registry and research platform, my Lyme data has enrolled over 13,000 patients to date. Lorraine Johnson, she's a JD MBA and the Chief Executive Officer of Lymedisease.org, and the principal investigator of MyLymedata.com. She's published over 40 peer-reviewed articles on Lyme disease and patient-centered healthcare, including three big data patient-driven research studies on which she served as a principal investigator. She has served on five federal advisory committees related to big data, patient-centered research, and patient registries. She's the co-author of Lyme Disease Guidelines of the International Lyme and Associated Disease Society.

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