Second International Summit on the Future of Health Privacy
Is there an American Health Privacy Crisis?
Overview
The Second International Summit on the Future of Health Privacy (“Health Privacy Summit”) was held in Washington, D.C., on June 6–7, 2012, centered on a single urgent question: Is there an American health privacy crisis? The Summit's answer was unequivocal—yes, the nation was on the verge of one.
The program opened with powerful accounts from individuals whose privacy had been compromised amid the rapid rollout of electronic health record (EHR) systems. These stories underscored a central concern: that political and economic incentives tied to technological adoption were outpacing a careful, rights-protective approach—highlighting the critical need for stronger law and policy safeguards.
During the Summit's Celebration of Privacy, Patient Privacy Rights honored the inaugural recipients of the Louis D. Brandeis Privacy Award. Congressman Joe Barton (R–TX) and Congressman Ed Markey (D–MA) were recognized for their leadership as congressional champions of privacy. Alan Westin, Emeritus Professor of Public Law and Government in Columbia University's Department of Political Science, and Ross Anderson, Professor of Security Engineering at the University of Cambridge Computer Laboratory, were honored for their groundbreaking contributions to consumer data privacy and security.
Program
Full Program including agenda, speakers, bios and sponsors
Summary Report - Prepared by the Survivability/Vulnerability Information Analysis Center (SURVIAC) for the U.S. Army Telemedicine and Advanced Technology Research Center (TATRC).
Videos
Welcome and Introduction
Day 1: Keynote: Creating a Culture of Privacy & Security Awareness by Farzad Mostashari, MD
Day 1: Patient Stories About Privacy Loss
Day 1, Session 1: First Do No Harm. Does Technology Harm Patients?
Day 1, Session 2: Is There Too Much or Too Little Regulation? Will States or Congress Regulate?
Day 1, Session 3: Big Data - More Information & More Risks
Day 1, Session 4: Summit Workgroups on Technology Solutions, Consumer Education, and Principles
theDataMap: All the Places Your Medical Data Goes
Celebration of Privacy: Louis D Brandeis Award to Congressman Joe Barton (R-TX) and to Congressman Ed Markey (D-MA)
Day 2, Session 1: Docs & EHRs. How is the Physician-Patient Relationship Affected?
Day 2, Session 2: Health Information Privacy & Health IT - Where Are We and How Did We Get Here?
Day 2, Session 3: HIEs: What We Know and Don't Know, Data Segmentation, & Patient-Centered Options (e.g., opt-in/opt-out)
Day 2, Session 4: Is Genetic Privacy Threatened?
Day 2, Session 5: How do Social Media, Mobile Devices, Medical Devices and Implants, Online 'Health Websites,' and Clouds Threaten Health Privacy?
