First International Summit on the Future of Health Privacy
Getting IT Right: Protecting Patient Privacy Rights in a Wired World
Overview
The 1st International Summit on the Future of Health Privacy ("Health Privacy Summit"), titled Getting IT Right: Protecting Patient Privacy Rights in a Wired World, was held in Washington, DC on June 13, 2011, The conference was designed to spark debate and meaningful interaction among a diverse set of stakeholders by grounding discussions in real-world health privacy cases. Panelists examined practical strategies for delivering responsible, realistic privacy protections for America’s next-generation health care system.
Experts from law, academia, and research; consumer and privacy advocacy organizations; health professions; providers and health plans; and the health IT industry collaborated to shape both the Summit’s content and format. Participants also identified key next steps, including developing an interdisciplinary research agenda; outlining principles and best practices for policymakers and industry; launching working groups to tackle contentious issues; and planning a high-level political summit on health privacy.
At the time, the United States was building a new health information technology (HIT) infrastructure—centered on electronic medical records—to capture and transmit personal health information electronically, while also enabling secondary uses, aggregation, large-scale collection, and analytics. Designed well, health information exchange could improve the efficiency, safety, and effectiveness of care and accelerate research that leads to new treatments. But without strong privacy protections built into its foundation, the emerging HIT system risked eroding individuals’ rights to control sensitive health information, undermining trust in the health care system, and weakening the patient–physician relationship. The stakes were high: not only the future of health care and its reform, but whether people would retain meaningful, reasonable rights to control and share personal information in the digital age.
Program
Full Program including agenda, speakers, bios and sponsors
Videos
Welcome and Introduction
Session 1: Alan Westin: How the American Public Views Patient Privacy and Health Technology Systems: What Ten Years of Surveys Tell Us
Session 2: Moderated by Anita Allen: Contrasting Beliefs about Privacy Protection in the Digital Era
Session 3: Case Studies: Finding Solutions for Three Urgent Privacy Issues:
Session 3-1. Moderated by Carl Gunter: Consent and Segmentation of Data
Session 3-2. Moderated by Barry Chaiken: Control of Patient Data—Health Information Exchanges
Session 3-3. Moderated by William M. Sage: Secondary Uses of Personal Health Information in Health Databases—Implications of Sorrell vs. IMS Health
Session 4: What do Research and History Tell Us About Privacy Today?: A Conversation with Alan Westin
Session 5: Keynote: Joy Pritts: Putting the “I” in Health IT Privacy and Security: How Consumers Can be Part of the Policy-Making Process
Session 6: Moderated by David W. Hilgers: Looking Ahead: The 2012 Health Priavcy Awards
