iCONCUR: informed CONsent for Clinical data Use for Research


Fri May 17, 2013


Lucila Ohno-Machado
University of California San Diego


Patient Centered Research





Biomedical research and healthcare improvements are accelerating through the sharing of data and use of predictive analytics on these data. Sources of data include electronic health record systems, clinical trial management systems, and personal monitoring devices—each with its own regulations for data use in research and quality improvement. Because different regulations exist, it is important for patients and healthcare providers to understand the potential benefits and risks of sharing data for research, so that truly informed decisions are made. I will discuss existing work in eliciting patient preferences for data and biospecimen sharing, and describe the tools that we are developing to facilitate this process at the iDASH National Center for Biomedical Computing (NCBC).



Lucila Ohno-Machado, MD, PhD is the founding chief of the Division of Biomedical Informatics and Professor of Medicine at UCSD, where she also serves as Associate Dean for Informatics and Technology at the School of Medicine. She received her medical degree from the University of São Paulo and her doctoral degree in medical information sciences and computer science from Stanford University. Her research focuses on predictive modeling, particularly on the evaluation of individualized probabilistic estimates for risk assessment and prognosis. She directs the training program in biomedical informatics at UCSD and is principal investigator for the iDASH NCBC.


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