National Committee on Vital and Health Statistics

Subcommittee on Privacy and Confidentiality

Tentative Agenda – Hearings on Privacy and Health Information Technology

February 23-24, 2005

Hubert H. Humphrey Building, Room 705-A
200 Independence Avenue, S.W.
Washington, D.C. 20201

Meeting Minutes

Day One – February 23, 2005


9:00 to 9:15 a.m. Introductions and Opening Remarks Mark Rothstein, J.D., Chairman
9:15 to 11:00 a.m. Panel 1 –  What is health privacy and why is it important?
  • Background
Thomas Murray, PhD, The Hastings Center
  • Dimensions of health privacy
Anita Allen-Castellito, JD, PhD, University of Pennsylvania
  • Comparative notions of health privacy
Bartha Maria Knoppers, PhD, University of Montreal
11:00 to 11:15 a.m. Break
11:15 to 12:15 p.m. How the Public Views Health Care, Privacy, and Information-Technology Applications Alan Westin, J.D.Columbia University
12:15 to 1:20 p.m. Lunch
1:20 to 3:00 p.m. Panel II –  Privacy in health care and in society
  • Privacy and health care
Bernard Lo, M.D.University of California, San Francisco
  • Patient interests
Joy Pritts, J.D, Health Policy Institute, Georgetown University
  • Privacy and substance abuse isssues
A. Thomas McLellanExecutive Director, Treatment Research Institute
3:00 to 3:15 p.m. Break
3:15 to 3:45  p.m. Statements from the Public
3:45 to 4:30 Subcommittee discussion
4:45 p.m. Adjourn

Day Two – February 24,  2005


9:00 to 9:15 a.m. Introductions and Opening Remarks Mark Rothstein, J.D., Chair
9:15 to 10:45 a.m. Panel III –  Disease and Health Advocacy Groups Len Lichtenfeld, M.D., F.A.C.P.Deputy Chief Medial Officer, American Cancer SocietyPowerPoint Presentation

Robert Levine, M.D.Chairman of Communications, Juvenile Diabetes Research Foundation

Linda Rosenberg, M.S.W.President and CEO, Nat’l Council for Community Behavioral Healthcare

10:45 to 11:28 a.m. Break
11:28 to 12:15 a.m. Subcommittee Discussion
12:15 to 1:00 p.m. Lunch
1:00 to 2:15 p.m. Panel IV –  Consumer Advocacy Groups Linda GolodnerPresident, National Consumers LeagueJoyce DubowAssociate Director, AARP Public Policy Institute, AARP
2:15 to 2:30 p.m. Break
2:30 to 3:45  p.m. Panel V – Privacy Concerns Related to Personal Health Records Janet Marino, M.D.Medical Informatics Consultant, MedicAlertWendy Angst, M.H.A., General Manager, CapMed
3:45 p.m. Adjourn

Should you require reasonable accommodation, please contact the CDC Office of Equal Employment Opportunity on (301) 458-4EEO (4336) as soon as possible. Times, topics, and speakers are subject to change. For final agenda, please call NCHS at 301-458-4200 or visit the NCVHS Home Page at