National Committee on Vital & Health Statistics
September 9, 1997
The Honorable Donna Shalala
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.
Don E. Detmer, M.D.
[A dissenting opinion was filed by two of the committee members.]
September 19, 1997
Dr. Don Detmer
Chairman, National Committee
on Vital and Health Statistics
Department of Health and Human Services
The National Committee on Vital and Health Statistics recently approved a letter on the issue of a unique health identifier for individuals. We were unable to support the Committee’s recommendations, and we wanted to state our objections clearly for the record.
First, the NCVHS letter supports the adoption and implementation of a unique health identifier for individuals. We believe that it is too early to reach that conclusion. Changes in the law or developments in technology could produce alternatives to an individual health identifier. We should only make a decision to have an identifier when we are ready to adopt one, and the Committee is clearly not ready to do so right now.
Second, we cannot support the adoption of the American Society for Testing and Materials criteria as a basis for selecting a health identifier. While the ASTM criteria were developed through an open process, there are many interest groups that did not participate in that process. Many of those outside the health industry — including privacy and patient advocacy groups — were not aware or were not able to be involved. While no criticism of ASTM is intended here, it is nevertheless true that if their work is to serve as the basis for making a major national decision that will affect every individual in the United States, a broader public debate about the criteria is essential.
In addition, the ASTM criteria are not complete or unambiguous. They include no clear method of evaluating identifier proposals under each of the criterion. Too much subjectivity is required. In addition, the criteria include no uniform way to weight the many different factors identified. As a result, the application of the criteria by different individuals could easily result in widely divergent assessment. In other words, the ASTM criteria in their present form will not provide a basis for objective judgments.
We do not disagree with everything in the NCVHS letter. We agree that the passage of comprehensive federal privacy legislation is an essential prerequisite to any decision on a universal health identifier for individuals. We would, however, defer all decisions about the identifier until that legislation is enacted. We also agree with the call for a cost-benefit evaluation and for more public hearings.