NCVHS Subcommittee on Privacy and Confidentiality

Hearings on Privacy and Health Information Technology

August 16-17, 2005

Hotel Monaco
501 Geary Street
San Francisco, CA  94102

Meeting Summary

Day One – Tuesday, August 16, 2005


1:30 p.m. to 1:45 p.m.  Introductions and Opening Remarks – Mark Rothstein, J.D., Chair

1:45 p.m. to 3:20 p.m. Panel I

  • Nicholas Terry, J.D. — Professor of Law and Co-Director, Center for Health Law Studies, St. Louis University, MO
  • Leslie Francis, Ph.D., J.D. — Chair, Department of Philosophy; Professor of Philosophy and Law, University of Utah

3:20 p.m. to 3:35 p.m. Break

3:35 p.m. to 5:10 p.m. Panel II

  • Pam Dixon, J.D. – World Privacy Forum, San Diego, CA
  • Dan Rode, M.B.A., F.H.F.M.A. – Vice President, Policy and Government Relations, American Health Information Management Association

5:10 p.m. Adjourn

Day Two – Wednesday, August 17, 2005


9:05 a.m. to 9:15 a.m.  Introductions and Opening Remarks – Mark Rothstein, J.D., Chair

9:15 a.m. to 10:30 a.m. Panel III

  • Bernard Lo, M.D. — Professor of Medicine, University of California, San Francisco
  • Henry T. “Hank” Greely — Dean F. and Kate Edelman Johnson Professor of Law, Stanford Law School

10:30 a.m. to 10:45 a.m. Break

10:45 a.m.  to 12:00 p.m. Panel IV

  • Gerald Hinkley, J.D. – Policy Subcommittee, Connecting for Health, Markle Foundation, and Partner, Davis Wright Tremaine LLP, San Francisco, CA
  • William R. Braithwaite, M.D., Ph.D. – Senior Vice President and Chief Medial Officer, eHealth Initiative, Washington, DC (invited)

12:30 p.m. to 1:30 p.m. Lunch

1:30 p.m. to 3:50 p.m. Subcommittee Discussion

  • NHII Work Group letter on Personal Health Records
  • Privacy Subcommittee report on National Health Information Network
  • Other business

3:50 p.m. to 3:56 p.m. Break

3:56 p.m. to 5:00 p.m. Subcommittee Discussion (continued)

5:00 p.m. Adjourn

Questions for Discussion

1) With respect to the design of a National Health Information Network (NHIN) do you prefer a model based on a regional health information organization, a model where individuals carry their own personal health information on a device, a trustee model, or something else?  Why?  What implications does your preferred model have for privacy and confidentiality?

2) What are the implications of permitting patients to control whether their records are part of the NHIN?  If permitting this option is appropriate, what mechanism should be used to obtain individual consent or authorization?

3) What information, if any, should individuals be able to exclude from their electronic health record or the NHIN?  What, if any, limits should apply to these exclusions?

4) What limitations, if any (beyond those of the HIPAA Privacy Rule) should be placed on access to personal health information in the NHIN?  How should such limitations be developed and applied?

5) Should individuals have the option of having their health records maintained only in paper form?

6) What other measures are needed to protect the privacy and confidentiality of personal health information and to build public trust in the NHIN?

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

Aug. 11, 2005