Lorraine Johnson, JD, MBA, is the Chief Executive Officer of LymeDisease.org and the principal investigator of its patient registry and research platform, MyLymeData, which has enrolled over 12,000 patients. She has 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 Principal Investigator.
She has co-authored two academic text book chapters on patient engagement, multi-stakeholder research projects, and patient registries. She has served on five federal advisory committees related to big data, patient centered research, and patient registries. She served as the Chair of the Patient Council for the Patient Centered Outcomes Research Institute and sat on both the Steering Committee and the Executive Committee of its big data project, PCORnet. She is currently advising NORC at the University of Chicago on a PCORI funded project regarding patient registries.
She has served on and spoken before numerous other government funded patient centered projects, including the international Cochrane Collaboration, the Society to Improve Diagnosis in Medicine, and Consumers United for Evidence Based Healthcare. She participated in the White House Precision Medicine Summit.