Fifth International Summit on the Future of Health Privacy
Health information in the Age of Surveillance
Overview
The Fifth International Summit on the Future of Health Privacy (“Health Privacy Summit”) was held in Washington, D.C., on June 3–4, 2015. By 2015, concerns about the direction of U.S. health privacy policy had intensified. Advocates argued that when the HIPAA Privacy Rule was finalized in 2002, it shifted long-standing norms of medical confidentiality by allowing broad disclosures of patient information without explicit patient consent. At the same time, a vast—and often opaque—health data marketplace had taken hold, with extensive data flows among entities far beyond the point of care. Yet despite the scale of this ecosystem, patients themselves still faced barriers to obtaining and using their own health information.
Against this backdrop, the 2015 Summit examined the real-world consequences of disclosing sensitive information—about distressed infants, students, employees, hospital patients, and epidemic response—on parents, families, workplaces, communities, and nations. The program also highlighted practical reforms and technical solutions aimed at restoring trust, strengthening safeguards, and ensuring that individuals can access and meaningfully control their health data.
During the Summit's Celebration of Privacy, Patient Privacy Rights awarded the Louis D. Brandeis Privacy Award to Alex (Sandy) Pentland, for his work in the UN Secretary General's Office of the World Economic Forum, and Masao Horibe, as chairman of the Personal Information Protection Commission, Government of Japan.
Program
Full 2015 Program including agenda, speakers, bios and sponsors
Videos
Session 1: Welcome and Introduction
Session 2: Keynote: Whose Distressed Baby ls lt? The Growing Threat to Our Medical Privacy in the American Workplace by Deanna Fei
Session 3: Watching Wellness in the Workplace Moderated by Jordan Robertson
Session 4: Keynote: The Evolution of Privacy in Japan Over the Past Half-Century - Lessons from American Privacy Law by Masao Horibe
Session 5: Welcome by Lawrence Gostin
Session 6: Promoting Research While Respecting Privacy - The Promise & Challenge of Using Patient Healthcare Data in Research Modreated by Joe Ali
Session 7: Keynote: A World That Counts by Sandy Pentland
Session 8: Breakout A: Recent Developments in Genetic Privacy Moderated by Mark A. Rothstein
Session 8: Breakout B: Somebody Call the Doctor! Stitching Up Student Privacy Moderated by Khaliah Barnes
Session 8: Breakout C: The Low-Hanging Fruit: Why Data Breaches Continue Moderated by Michelle DeMooy
Session 8: Breakout D: - Health Data: A Bone of Contention between Patients and Researchers - Protecting Privacy and Security of Patient-controlled Health Data Moderated by Bill Pewen
Session 9: lntimateWearables and Big Data Moderated by Debbie Bucci
Session 10: Keynote: A Conversation with Jocelyn Samuels
Session 11: Celebration of Privacy: Louis D Brandeis Award to Alex "Sandy" Pentland and to Masao Horibe
Session 12: Keynote: Looking Around the Corner - Emerging lssues in Electronic Health lnformation and Privacy by Lucia Savage
Session 13: Limiting Patient Rights to Access Personal Health Data Moderated by Adrian Gropper
Session 14: Privacy and Public Spaces - Privacy and Epidemics, School Laptops and Spying
Session 15: Keynote: Privacy in the New Ecology of lnformation by Andrew Dillon
