Lorraine Johnson, JD, MBA
A data-driven approach to optimizing clinical study eligibility criteria based on MyLymeData registry data
Lorraine Johnson, JD, MBA, is the Chief Executive Officer of LymeDisease.org and the principal investigator of its patient registry, MyLymeData, which has enrolled over 17,000 patients. She has published over 50 peer reviewed articles on Lyme disease and patient centered healthcare, including five big data patient driven research studies.
She has served on five federal advisory committees related to big data, patient centered research, and patient registries. She also sat on both the Steering Committee and the Executive Committee of PCORnet, the big-data project of the Patient Centered Outcomes Research Institute. She participated in the White House Precision Medicine Summit. She has presented extensively at professional, medical, and governmental conferences including the Cochrane Colloquium, the National Academies of Science, Engineering and Medicine, the American Association for the Advancement of Science, the NIH Collaboratory, the NIH Science of Team Science Conference, and the Society to Improve Diagnostics in Medicine