Agenda: Meeting 2. Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule
Monday, October 1, 2007
8:00 am Continental Breakfast
8:30 am Welcome and Opening Remarks
Lawrence Gostin (Committee Chair)
8:45 am Historical Overview of the HIPAA privacy rule
Marcy Wilder
Hogan & Hartson L.L.P.
10:00 am Break
10:15 am Patient Privacy Rights: How to Use Patient Control of Health Information to Create Digital Superhighway for Research
Deborah C. Peel, MD
Founder and Chair of Patient Privacy Rights
10:45 am Public Perceptions of Privacy and Health Research, Pre-2007
Alan Westin
Privacy Consulting Group
11:15 am Important considerations in the privacy of health information
Janlori Goldman
Director, Health Privacy Project
12:15 pm Discussion
Lawrence Gostin, Committee, and Guests
12:45 pm Lunch
1:45 pm Safeguarding privacy through design of information systems
Stefan Brands
President, Credentica
2:15 pm Implications of the Privacy Rule for Health Services Research
Katherine Kahn
Senior Natural Scientist, RAND
Professor of Medicine, UCLA
2:45 pm Implications of the Privacy Rule for trialists and academic research
Robert Califf
Vice Chancellor for Clinical Research and Director|
Duke Translational Medicine Institute
3:15 pm Perspectives on Canadian Privacy Protections and informed consent
Frank L. Silver
Professor of Medicine (Neurology), University of Toronto
Co-PI of the Registry of the Canadian Stroke Network
3:45 pm Break
4:00 pm Research Privacy under HIPAA and the Common Rule – the need for harmonization
Mark Rothstein
Director, Institute for Bioethics, Health Policy, and Law
University of Louisville
4:30 pm Discussion
Lawrence Gostin, Committee, and Guests
5:30 pm Adjourn Day 1
Tuesday, October 2, 2007
8:30 am How the Public and Research Participants See Health Research and Privacy Issues - A National Survey, 2007
Alan Westin
Privacy Consulting Group
9:30 am National Survey of Epidemiologists on the HIPAA Privacy Rule and its Effects on Health Research
Roberta Ness
University of Pittsburgh
10:00 am Survey updates
Sarah Greene, HMO Research Network
David Helms, Academy Health
Richard Schilsky, American Society of Clinical Oncology
Raymond Gibbons, American Heart Association
10:45 am Break
11:00 am Health Research and Privacy – the Way Forward
Mark Barnes
St. Jude Children’s Research Hospital
11:30 pm Committee Deliberations: Discussion of surveys, draft report outline, potential recommendations, future directions, and work plans
Lawrence Gostin, Committee, and Consultants
12:00 pm Working Lunch
1:00 pm Continued deliberations
3:00 pm Concluding Remarks
Lawrence Gostin
Adjourn Day 2
Back to Meeting