Sorry. This meeting was not broadcast live on the Internet, so a recording of the meeting is not available.

FINAL AGENDA

NATIONAL COMMITTEE ON VITAL AND HEALTH STATISTICS

SUBCOMMITTEE ON PRIVACY AND CONFIDENTIALITY

January 28-29, 1998
9:00 a.m. - 5:00 p.m.

[Download zipped transcript files]

Hubert H. Humphrey Building, Room 303A
200 Independence Avenue, SW
Washington, DC 20201

THIS MEETING IS OPEN TO THE PUBLIC.

Minutes

Wednesday, January 28, 1998 -- Discussion Topic: Identifiability of Data

Transcript

The Subcommittee on Privacy and Confidentiality will be conducting a day long issues-focused roundtable discussion to gather information, stimulate dialogue, and identify issues concerning ways to support important functions (e.g., research, health care, quality assurance, cost containment, law enforcement, among others) that rely on personal health information without unduly impinging on the privacy interests of individuals. Among invited participants are representatives from interest and advocacy groups, government, the private sector (for profit and non profit), the health care industry, the research community and academia. Discussion questions include:

  • "Identifiability" of data: Do we agree on what it means?
  • How is information technology changing the identifiability of data?
  • What are the alternatives to the use of identifiable data?
  • How effective, affordable, practical, and final are technologies for eliminating the identifiability of data?
  • Is there a place for consideration of "risk" in the "identifiability" dialogue?
  • How is the increasing availability of personal data from government files and from commercial sources affecting the identifiability of stripped data?
9:00 a.m. Convene Roundtable Discussion
Introduction of Participants		 Robert Gellman, Chair
10:30 a.m. Break
10:45 a.m. Roundtable Discussion Participants (listed below)
12:30 p.m. Lunch
1:30 p.m. Roundtable Discussion Participants
3:00 p.m. Break
3:15 p.m. Roundtable Discussion Participants
5:00 p.m. Adjourn
Participants: ROUNDTABLE ON IDENTIFIABILITY OF DATA

A. G. Breitenstein, J. D.
Director, Health Law Institute

Easley Hoy
Assistant Chief, Statistical Research Div. and Chair, Disclosure Review Board, U.S. Bureau of Census

Gary Friend
Vice President, Planning and Communications, IMS America

Janlori Goldman, J.D.
Director, Health Privacy Project, Institute for Healthcare Research and Policy, Georgetown University Medical Center

David Korn, M.D.
Senior Vice President, Division of Biomedical and Health Sciences, The Association of American Medical Colleges

Michael Lundberg
Executive Director, Virginia Health Information

Deirdre K. Mulligan
Center for Democrary and Technology

Ben Steffen
Health Care Access and Cost Commission, State of Maryland

Latanya Sweeney
Laboratory for Computer Science, Massachusetts Institute of Technology

Alvan O. Zarate, Ph.D.
Confidentiality Officer, National Center for Health Statistics, CDC

Thursday, January 29, 1998 -- Discussion Topic: Health and Medical Registries

Transcript

The Subcommittee on Privacy and Confidentiality will be conducting a day long issues-focused roundtable discussion to gather information, stimulate dialogue, and identify issues concerning health and medical registries and the extent to which they may pose or lessen threats to the privacy and confidentiality of individuals whose data is included in the registry. Among invited participants are representatives from interest and advocacy groups, government, the private sector (for profit and non profit), the health care industry, the research community and academia.

Discussion questions include:

  • What is a register? What are common and unique characteristics?
  • What variety of purposes are registers intended to serve? Have they been used for unintended purposes?
  • What registries are stimulated or compelled by governmental action? The private sector? Are the privacy considerations different?
  • What range of current activities might qualify as registries?
  • How is identifiable patient data acquired and how is its disclosure controlled?
9:00 a.m. Convene Roundtable Discussion
Introduction of Participants		 Robert Gellman, Chair
10:30 a.m. Break
10:45 a.m. Roundtable Discussion Participants (listed below)
12:30 p.m. Lunch
1:30 p.m. Roundtable Discussion Participants
3:00 p.m. Break
3:15 p.m. Roundtable Discussion Participants
5:00 p.m. Adjourn
Participants: ROUNDTABLE ON REGISTRIES

Elizabeth Andrews, Ph.D.
Director, Worldwide Epidemiology, Glaxo-Wellcome, Inc.

Brenda Edwards, Ph.D.
Associate Director, National Cancer Institute

Susan Mize
Director, Metabolic Information Network

Michael Langan
Vice Pres. of Public Policy, National Organization of Rare Diseases (NORD)

Susan Panny, M.D.
Director, Office for Hereditary Disorders, Maryland Department of Health and Mental Hygiene

Janice Platner
Massachusetts Cancer Registry Advisory Committee

Priscilla Regan
Department of Public and International Affairs, George Mason University

Lewis Roht, M.D., M.P.H.
Director of Epidemiology, Hoechst, Marion, Roussel

Scott F. Wetterhall, M.D., M.P.H.
Medical Director, Office of the Director, Centers for Disease Control and Prevention

George H. Van Amburg, M.P.H., M.S.
Senior Fellow, Michigan Public Health Institute

Times, topics, and speakers are subject to change. For final agenda, please call 301-436-7122 at NCHS or visit the NCVHS Home Page at http://aspe.os.dhhs.gov/ncvhs/

Note: In the interest of security, the Department has instituted stringent procedures for entrance to the Hubert H. Humphrey Building by non-government employees. Thus, persons without a government identification card may need to have the guard call for an escort to the meeting room.

10/9/98