Privacy Preserving Technology and Policy: Institution and Patient-Centered Approaches

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Abstract: I will discuss how informatics innovations are enabling large scale research related to Precision Medicine. UCSD is leading the California Precision Medicine Consortium involving six healthcare provider organizations that are recruiting thousands of participants to the national All of Us Research Program (formerly known as Precision Medicine Initiative). We are also leading the development of DataMed, a data discovery index that will “do for data what PubMed did for articles,” and the pSCANNER Clinical Data Research Network. At the intersection of these initiatives is a core of innovative informatics tools and studies related to data sharing in a privacy-preserving manner, that we developed over the years.  The tools address distributed analytics and differential privacy, and the preliminary studies include soliciting and implementing patient preferences for data and biospecimen sharing.

Bio: Lucila Ohno-Machado, MD, MBA, PhD received her medical degree from the University of São Paulo and her doctoral degree in medical information sciences and computer science from Stanford. She is Associate Dean for Informatics and Technology, and the founding chair of the Health System Department of Biomedical Informatics at UCSD, where she leads a group of faculty with diverse backgrounds in medicine, nursing, informatics, and computer science. Prior to her current position, she was faculty at Brigham and Women’s Hospital, Harvard Medical School and at the MIT Division of Health Sciences and Technology. Dr. Ohno-Machado is an elected fellow of the American College of Medical Informatics, the American Institute for Medical and Biological Engineering, and the American Society for Clinical Investigation. She serves as editor-in-chief for the Journal of the American Medical Informatics Association since 2011. She directs the patient-centered Scalable National Network for Effectiveness Research funded by PCORI (and previously AHRQ), a clinical data research network with over 24 million patients and 14 health systems, as well as the NIH/BD2K-funded Data Discovery Index Consortium. She was one of the founders of UC-Research eXchange, a clinical data research network that connected the data warehouses of the five University of California medical centers. She was the director of the NIH-funded National Center for Biomedical Computing iDASH (integrating Data for Analysis, ‘anonymization,’ and Sharing) based at UCSD with collaborators in multiple institutions. iDASH funded collaborations involving study of consent for data and biospecimen sharing in underserved and under-represented populations.