are patient identified. It may be possible to use aggregated or anonymous data for certain applications. In other cases, such as some long-term medical research, identifiable data may be the only alternative. Understanding these different uses and the differing needs for patient-identifiable data will allow a more reasoned debate of patient privacy issues.

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). Consumers currently have limited avenues for seeking redress of alleged violations of privacy or for fully understanding their rights in this area. Although some hospitals employ advocates to act on the patient's behalf in addressing a variety of concerns, privacy is only one of a variety of problems that these patient advocates must address, and many other provider organizations have no one to counsel patients about their rights to privacy. Moreover, there is no obvious place for patients to lodge concerns regarding alleged breaches of privacy by organizations that are not care providers, such as insurers, benefits managers, and marketing firms. Consumers need a mechanism for learning about their rights and how they may seek recourse for violations of fair information practices, and they need to be protected from the possibility that their access to care may be jeopardized by exercising their established privacy rights. A privacy advocate appointed within the Department of Health and Human Services is ideally situated to work with the Office of Consumer Affairs to determine the type of ombudsman that would be appropriate for health privacy issues.

Several different models for a privacy ombudsman are possible, depending on the anticipated size of the need and the level of decentralization desired. For example, a national telephone hotline could be established to provide consumers a ''one-stop shop" for guidance regarding means of seeking redress; state offices could be established to field complaints from patients and conduct investigations as necessary. Several state Attorney General's offices already have ombudsmen to address patient safety and rights in nursing homes and to accept complaints regarding insurance companies; their roles could expand to address issues related to patient privacy, by taking advantage of existing capabilities and infrastructure.12


Institute of Medicine. 1995. Real People, Real Problems: An Evaluation of the Long-term Care Ombudsman Programs of the Older Americans Act, National Academy Press, Washington, D.C.

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