demonstrable need would be a first step toward promoting responsible use of patient information and reducing concerns about privacy. Given its role in recommending privacy standards and its position as a neutral arbiter, the Department of Health and Human Services seems the logical organization to sponsor such a study.

Recommendation 3.5: The Department of Health and Human Services should work with the U.S. Office of Consumer Affairs to determine appropriate ways to provide consumers with a visible, centralized point of contact regarding privacy issues (a privacy ombudsman). This effort would provide patients with a centralized source of information regarding patient privacy and provide a means to field complaints from patients about alleged breaches of privacy.

Developing Patient Identifiers

The current effort to develop standards for a universal health identifier as mandated by the Health Insurance Portability and Accountability Act has potential implications for patient privacy.9 While use of a common identifier for indexing patient records has the potential of improving the quality and reducing the costs of health care by making a more complete patient record available to providers, of facilitating the creation of longitudinal patient records for health care researchers, and of simplifying the administration of health care benefits, it could also facilitate the assembly of information about patients without their consent (e.g., the linkage of medical records with financial and employment records).

Recommendation 4: Any effort to develop a universal patient identifier should weigh the presumed advantages of such an identifier against potential privacy concerns. Any method used to identify patients and to link patient records in a health care environment should be evaluated against the privacy criteria listed below.

  • 1.  

    The method should be accompanied by an explicit policy framework that defines the nature and character of linkages that violate patient privacy and specifies legal or other sanctions for creating such linkages. That framework should derive from the national debate advocated in Recommendation 3.

  • 2.  

    It should facilitate the identification of parties that link records so that those who make improper linkages can be held responsible for their creation.

9  

The Health Insurance Portability and Accountability Act directs the Secretary of Health and Human Services to promulgate standards for a universal health identifier that will be assigned to each individual (i.e., patient), employer, health plan, and health care provider for use in the health care system.



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