Lorraine Johnson
Patient Council PCORnet

About Me

Lorraine Johnson, JD, MBA, is a member of the Patient Engagement Advisory Panel of the Patient Centered Outcomes Research Institute (PCORI) as well as the patient representative of PCORnet Steering and Executive Committee for the National Patient Centered Clinical Research Network (PCORnet) and the chair of the Patient Council for PCORnet. She is the Co-Chair of the Steering Committee of Consumers United for Evidence-Based Healthcare (CUE), a national coalition of approximately 40 consumer advocacy organizations that seeks to improve the consumers’ ability to engage in and demand high quality healthcare. She is the Executive Director of LymeDisease.org (LDo), a non-profit 501(c)(3) serving the patient community nationally through advocacy, education and research. For the past ten years, she has been engaged in patient and consumer issues locally, nationally and internationally. This year she was a plenary speaker at the HTAi (Health Technology Assessments International) conference on the topic of patient engagement in research. Last year she was a plenary speaker at the Cochrane Colloquium addressing patient engagement in Cochrane assessments. She is the author or co-author of over 40 peer reviewed publications, most recently “Patient-Powered Research Networks Aim To Improve Patient Care And Health Research” (Health Affairs 2014).

At Medicine X 2015

Saturday, September 26 10:35 am (Lower Lobby - West)
Big data and patient powered research
Many disruptive technology and sociological factors today combine to allow patient powered research projects to take the helm at seeking solutions to the medical problems that impact patient lives. Patient... Read more
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