UCSD Division of Biomedical Informatics
The debate about the advantages and disadvantages of sharing biomedical research data and healthcare data has been confounded by conflicts of interest that are not always explicit. Data producers (e.g., researchers, healthcare institutions), data consumers (e.g., researchers, analysts), data funders (e.g., federal agencies, foundations) and data disseminators (e.g., editors, libraries) are driven by a variety of interests. While data sharing for genomics and some particular clinical studies has been encouraged or even mandated, sharing of data collected in healthcare processes requires additional considerations, related primarily to human subjects’ consent and potential risk of privacy breaches. I will provide a high-level view of how some of these issues have been addressed, and how some of the above-mentioned groups have developed policies related to data sharing.
Dr. Lucila Ohno-Machado s a Professor of Medicine and founding chief of the Division of Biomedical Informatics at UCSD. In addition to being this project’s principal investigator, she is the director of the Driving Biological Projects (DBP) core and has experience leading multidisciplinary projects at the intersections of biomedicine and quantitative sciences. Her research group has transitioned from Harvard Medical School to UCSD to continue their work in biomedical pattern recognition from large data sets, statistical learning, and privacy technology. The group has also accepted a critical role at UCSD Medical Center, including development of tools for quality assessment and the implementation of a clinical data repository for research, and the leadership of the Data Access Task Force, which establishes the policies and mechanisms for researchers to access UCSD data.
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