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Department of Health and Human Services


Subcommittee on Privacy and Confidentiality

August 16-17, 2005

Hotel Monaco
San Francisco, CA

Meeting Synopsis

The National Committee on Vital and Health Statistics Subcommittee on Privacy and Confidentiality was convened on August 16 -17, 2005 in San Francisco, CA. The meeting was open to the public.


Committee members

  • Mark A. Rothstein, J.D., Chair
  • Richard K. Harding, M.D.
  • John P. Houston, J.D.
  • Harry Reynolds
  • Paul C. Tang, M.D.

Staff and Liaisons

  • Maya Bernstein, Lead Staff
  • Jeannine Christiani, Magna
  • Mary Jo Deering, NIH
  • Beverly Dozier-Peeples, CDC
  • Marjorie Greenberg, NCHS/CDC
  • Gail Horlick, CDC (via phone)
  • Debbie Jackson, NCHS
  • Katherine D. Jones, NCHS
  • Susan McAndrew, OS/OCR
  • Marietta Squire, NCHS/CDC


  • William Braithwaite, eHealth Initiative
  • Pamela Dixon, World Privacy Forum
  • Leslie P. Francis, University of Utah
  • Henry T. “Hank” Greely, Stanford Law School
  • Gerald M. Hinkley, Markle Foundation
  • Bernard Lo, UCSF
  • Dan Rode, AHIMA
  • Nicholas P. Terry, St. Louis University School of Law


Note: Revisions were made to a draft PHR letter. Committee members agreed that they were not yet in a position to preview recommendations in the September 2005 full Committee meeting.

Action steps:

  • Mr. Rothstein will assemble a preliminary paper on the privacy and confidentiality implications of the NHIN and related recommendations for the September full Committee meeting. He asked other Subcommittee members to peruse the testimony and comprise a list of recommendations for consideration.
  • A working conference call will occur on October 3, 2005.
  • Two working sessions will take place at the September 2005 full Committee meeting to continue work on PHR recommendations.
  • An additional Subcommittee meeting will occur on October 21, 2005 to continue working on the recommendations.

Topics and Presenters

All panelists at this two-day hearing were asked to address the following questions:

  1. Do you prefer a design model for the NHIN that is based on a RHIO, 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 individuals 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 EHR 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 all 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?

Tuesday, August 16, 2005

Panel I

  • Nicholas P Terry, J.D. Center for Health Law Studies, St. Louis University, MO
  • Leslie P. Francis, Ph.D., J.D. University of Utah, Salt Lake City, UT

Panel II

  • Pamela Dixon, J.D. World Privacy Forum, San Diego, CA
  • Dan Rode, M.B.A., F.H.F.M.A. AHIMA, Chicago, IL

Wednesday, August 17, 2005

Panel III

  • Bernard Lo, Ph.D. UCSF, San Francisco, CA
  • Henry T. “Hank” Greeley, J.D. Stanford University, Palo Alto, CA

Panel IV

  • Gerald M. Hinkley, J.D. Markle Foundation, San Francisco, CA
  • William R. Braithwaite, M.D., Ph.D. eHealth Initiative, Washington, D.C. (via phone)

See official transcript for full subcommittee discussion.