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This talk describes a techno-policy pursuit to design a minimally invasive Nationwide Health Information Network (NHIN) that achieves guarantees of real-world applicability and guarantees of trust.
The American Recovery and Reinvestment Act of 2009 ("the stimulus bill") provides the financial incentives, political will, and policy attention to have an NHIN -- a national network in which medical information flows seamlessly across computers, devices, organizations and locations -- by the year 2015. This provides a quintessential moment in history for technology design to reshape privacy discourse and not be held to historic, eroding trade-offs. This is challenging given policy decisions that are already underway. One technical design decision can change tons of policy decisions for the better, but once policy becomes set in stone, the opposite happens, the opportunity for such innovation is lost. For technology design to transform these discussions, we need some effort that weaves technology and policy together. The goal is not to have religion around any one particular design for the NHIN, but to inform and shape current policy decisions underway by a comparison of policy options related to design decisions.
This talk introduces 6 preliminary designs and 3 base case designs, including the current design that is the topic of current policy discourse in DC. An ideal outcome would be a summary chart, where each row is a design, and each column is a qualified requirement, and the values in the cells are scientifically derived. Having scientific results to inform and educate discourse is the best assurance to America of a trustworthy NHIN and for America to make the most of this historic moment.
Reception to follow.
Latanya Sweeney, PhD is a Distinguished Career Professor of Computer Science, Technology, and Policy in the School of Computer Science at Carnegie Mellon University and the Director and founder of the Data Privacy Lab, and is currently a visiting faculty member at Harvard and MIT. She was recently appointed to the Privacy and Security Seat of the Federal HIT Policy Committee, the group responsible for advising ONC on policy for the NHIN. Dr. Sweeney has made a career of weaving technology and policy together, by developing algorithms and modeling real-world systems that allow information to be shared with provable guarantees of privacy (legally and scientifically) while remaining practically useful. Her work has received numerous awards and patents and been heavily cited. She received her PhD in computer science from the Massachusetts Institute of Technology. Her undergraduate degree in computer science was completed at Harvard University. More information about Dr. Sweeney is available at her website dataprivacylab.org/people/sweeney/index.html.