BOX 6.2 Possible Legislative Options for Addressing Systemic Concerns

Patients currently have few rights regarding the privacy of health information contained in private databases, beyond those provided at the state level. State laws are inconsistent, often incomplete, and difficult to prosecute. A number of initiatives could be pursued to give patients greater rights regarding the protection of health information. Should the nation wish to pursue a pubic policy course that places greater emphasis on the privacy and security of patient-specific health information, legislation (or, equivalently, regulation with the force of law) may be needed. The committee believes that legislation of the following types could enhance the privacy of health-related information.

  • Legislation to restrict access to patient-identifiable health information based on the intended use. For example, legislation could define acceptable activities to include (1) delivery of care to patients; (2) reviews of claims for payment; (3) research uses that are approved by institutional review boards (see Chapter 5); (4) analyses of the quality of care and cost of care conducted by care providers and those at financial risk for care; and (5) the detection or prevention of fraud, such as billing for multiple prescriptions or for services that were never rendered. In this last case, such efforts should be sanctioned by the organization and subject to external audit to demonstrate their necessity, utility, and conformance to organizational practices. The legislation could define all uses of patient-identifiable information outside the prescribed set to be illegal and subject to civil and/or criminal penalties.
  • Legislation to prohibit specific practices of concern to patients. For example, legislation could prevent self-insured employers from making individual employment decisions on the basis of patient-specific health information (as long as the

contentious. Economic and other forces create incentives to link individual patient data in ways that may well be detrimental to patient interests For example, linkages of patient information with purchasing and financial information can subject individuals to marketing campaigns for new or existing therapies. Patient information linked to employment may create incentives for denying an otherwise qualified individual a job

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.


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.

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