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Federal Workgroup Meets to Discuss National Health Information Infrastructure (NHII)

February 26, 2003

The federal Workgroup on the National Health Information Infrastructure (NHII) met on January 27 and 28, 2003 to discuss the development of a national health-information system and the design of electronic personal medical records. The Workgroup is part of the National Committee on Vital and Health Statistics in the U.S. Department of Health and Human Services. The meetings spanned one and a half days and focused on current and future Internet technology and policy, standards for personal health records, and authentication issues (how to identify users of the NHII system).

The Workgroup invited 21 experts to testify. Following are some of the speakers' perspectives that might be of interest to Health Freedom Watch readers:

  • The way in which patients' health information is being collected and transmitted is evolving. For example, Vint Cerf of WorldCom noted that clothing is being developed that can detect and record patients' vital signs (heart rate, temperature, etc.).
  • He also stressed that state medical licensing laws are going to have to be revisited regarding health care and technology (i.e., telemedicine).
  • Joy Pritts of Georgetown University noted that many of the commercial Web sites that currently keep patients' medical records may not be covered by the federal medical privacy rule or state privacy laws.
  • She also pointed out that in every state, the provider who creates a medical record owns the record, but the patient has a right to access the information.
  • Pritts also stressed that the plan to assign everyone a unique health identifier is a hot-button issue and it will have to be handled with the utmost diplomacy.
  • Ed Hammond of Duke University and the Markle Committee on Data Standards noted that some 50 to 60 disease registries currently exist in the U.S. Hammond also noted that he created and has maintained his own personal medical record since the 1990's and he decides who can see which parts of it.
  • Kepa Zubeldia, president of Claredi Corporation and Workgroup member, stressed the need for adequate fields for a "minimum data set." He noted, for example, that when one data set being used did not include a field for religion, the information was instead entered into the field for allergies and "ended up with patients that were allergic to Catholics, and to Baptists and so on."
  • Pat Wise of the Healthcare Information and Management Systems Society (HIMSS) noted that currently the Social Security number (SSN) is the common identifier used to link patient records, but problems exist with using it. However, she stressed that the Enterprise Master Patient Index (EMPI) could be used to manage patient identification numbers and cross-reference them across disparate systems.
  • Peter Waegemann of the Medical Records Institute pointed out that NHII systems have not been successful in other countries, including Sweden and the Netherlands. He said that even though each country spent over 30 million Euros each on its system, Sweden's was discontinued and the Netherlands' was recently shut down after much criticism.

Transcripts of the NCVHS's meetings can be accessed at the Committee's Web site: www.ncvhs.hhs.gov.

This article was originally published in the January/February 2003 issue of Health Freedom Watch.