Mar 10: "Supporting Patient Consents: A Computer Science Researcher's Experiences In A Complex World" (Arnon Rosenthal, MITRE)

Technology in Government (TIG)  and Topics in Privacy (TIP)

3/10/2014 refreshments served at 2:30p, discussion 3 to 4pm in room K354, at 1737 Cambridge Street, Cambridge, MA 02138.  

Title: Supporting Patient Consents: A Computer Science Researcher's Experiences In A Complex World

Discussant: Arnon Rosenthal, MITRE

To protect patient privacy, and avoid liability, data holders may disclose patient records only in accordance with patient consent or government rules. One desires granular control over topics (e.g., HIV), data categories (e.g., medications), recipients (mental health professionals treating me), and also over technical protections (require two phase authentication?). Current initiatives emphasize compliance with applicable laws, so data holders will be willing to share. They do little to be appropriate for each patient's needs to balance sharing and protection. For example, we demonstrate that a CS PhD is insufficient education for wisely managing "checkbox" preferences, and show how legal "protections" actually may cause patient preferences to be less appropriate. We sketch a radical alternative that generates detailed policies from a brief description of patient concerns, dropping the assumptions of perfect appropriateness of the policy and perfect enforcement. We then invite discussion of aspects that require legal/regulatory adjustments, and of other data protection arenas where such an approach might be suitable. The opinions represent only the speaker. The work was done in collaboration with Peter Mork, Jean Stanford, Anne Kling, Gail Hamilton, Linda Koontz, Marc Hadley, and others. It was funded by the MITRE Corporation and the U.S. Substance Abuse and Mental Health Services Agency.

Bio:
Arnon Rosenthal led MITRE's Kairon Consents project, and consults and publishes in the areas of data sharing, databases, cloud migration, and policy based systems. Previous employers included Computer Corporation of America, Sperry Research, the faculty of University of Michigan (Ann Arbor), and sabbaticals at IBM Almaden Research and ETH Zurich. He holds a PhD (EE-CS, 1975) from U. Calif. Berkeley.