Fourth International Summit on the Future of Health Privacy
Controlling Your Personal Health Information: Now Is the Time
Overview
The Fourth International Summit on the Future of Health Privacy (“Health Privacy Summit”) was held in Washington, D.C., on June 4–5, 2014. That year, global attention was sharply focused on the security and use of sensitive personal data. Senate hearings on the data broker industry, the Target breach, the continuing impact of Edward Snowden’s revelations about NSA surveillance, and the White House Office of Science and Technology Policy’s report on Big Data all intensified questions about how government and companies collect, use, and protect personal information. Across the world, people were asking whether their data were truly protected—and whether individuals could still exercise the right to privacy, the right to be “let alone,” in the digital age.
The 2014 Health Privacy Summit reflected this urgency, centering on a simple but pressing concern: who holds our most sensitive data, who uses it, and why? In health care, the need to build patient access and meaningful control into health information systems was increasingly clear. Although Fair Information Practices (FIPs) were developed in the 1970s to guide responsible data governance, technology systems in the United States evolved rapidly without those protections at their core. By 2014, hidden data collection and surveillance-like uses of health information had become routine.
The 2014 Summit was designed to bring these realities into the open—helping the public understand when health data are used and highlighting serious gaps in privacy and security safeguards. A central theme was the need for privacy-enhancing technologies, including (1) strong, voluntary, patient-controlled cyber-identities to enable direct, secure communication with physicians, and (2) real-time, automatic electronic access to one’s own health data.
During the Summit's Celebration of Privacy, Patient Privacy Rights awarded the Louis D. Brandeis Privacy Award to Latanya Sweeney, for her groundbreaking work that showed how anonymous data wasn't, and Peter Schaar, as chairman of the European Academy for Freedom of Information and Data Protection.
Program
Full 2014 Program including agenda, speakers, bios and sponsors
Videos
Session 1: Welcome and Introduction
Session 2: Keynote: An Ethical Duty to Protect Your Own Health Privacy by Anita Allen
Session 3: Privacy, Big Data, & Mobile: Technologies Operating Outside HIPAA Protection
Session 4: Keynote: Privacy In Times of Big Data by Peter Schaar
Session 5: Protecting Health Information in Research, Mental Health, and Genetics
Session 6: Keynote: A Conversation with Jeremy Grant
Session 7: Breakout A: Healthcare Laws - US State and International Perspectives
Session 7: Breakout B: Privacy and the New Health Care Models: Real World Problems
Session 7: Breakout C: Health Data Exchange - What is it and What Should You Do? Opt-In or Opt-Out?
Session 8: Do You Know Where Your Data Is?
Session 9: Keynote: “A Conversation with Karen DeSalvo
Session 10: Celebration of Privacy: Louis D Brandeis Award to Latanya Sweeney
Session 11: Celebration of Privacy: Louis D Brandeis Award to Peter Schaar
Session 12: Welcome to Day 2 by Deborah Peel
Session 13: Debate: That Individuals Should Maintain Their Own Health Data: Kimberly Gray vs Michelle DeMooy
Session 14: Surveillance of Healthcare Data: Who's Looking? What Data Are They Using? What Happened to Fair Information Practices?
Session 15: Assuring an Individual's Access to Hew Own Health Records
Session 16: Keynote: The Search for the Mystery Woman and Other Naked Truths Learned from Re-Identification by Adam Tanner
