September 9, 1997
The Honorable Donna Shalala
Secretary
Department of Health and
Human Services
200 Independence Avenue, SW
Washington, DC 20201
Dear Secretary Shalala:
The National Committee on Vital and Health Statistics (NCVHS) is responding to the requirement of Congress to set a standard for a unique health identifier for each individual for use in the health care system. While the NCVHS continues to support the concept of a unique health identifier for individuals, we believe it would be unwise and premature to proceed to select and implement such an identifier in the absence of legislation to assure the confidentiality of individually identifiable health information and to preserve an individual's right to privacy.
The selection of a unique health identifier for individuals will become the focus of tremendous public attention and interest, far beyond that afforded to other health privacy decisions. No choice should be made without considerably more public notice, hearings, and comment.
Until a new federal law adequately protects the privacy of identifiable health information, it is not possible to make a sufficiently informed choice about an identification number or procedure. The degree of formal legal protection for personal health information will have a major influence on both the decision and public acceptance of that decision. Passage of a comprehensive health privacy law may make the choice of an identifier easier and less threatening to privacy.
A unique health identifier for individuals cannot be properly protected from misuse under current law. The Committee reaches this conclusion notwithstanding the enactment of criminal penalties for wrongful disclosure as part of the Health Insurance Portability and Accountability Act of 1996. Additional legislation may be required to authorize the use of some alternatives or to provide adequate restrictions for other alternatives.
We recommend alternative methods of identifying individuals and linking health information of individuals for health purposes be evaluated on the basis of the American Society for Testing and Materials (ASTM) criteria coupled with a cost-benefit evaluation and public comment. The committee intends to continue to receive public comment on this issue and will revisit this issue at our November meeting.
We appreciate your national leadership in health data standards, electronic data interchange and privacy, and we are privileged to work with you on these issues.
Sincerely,
/s/
Don E. Detmer, M.D.
Chair
[A dissenting opinion was filed by two of the committee members.]