Health Insurance Portability and Accountability Act (HIPAA): must there be a trade-off between privacy and quality of health care, or can we advance both?

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The Health Insurance Portability and Accountability Act of 1996 (HIPAA) presents an important challenge to the healthcare system in its evolution from a cottage industry to a new, yet-to-be determined form. To guide the system rationally requires clinical research on a massive scale. Will HIPAA stimulate an advance in medical research so that we have evidence to guide our medical decisions and policies, or will it lead to Draconian restrictions that push the healthcare system toward a less rational, less informed approach? Medical practice evolved in the 20th century from an almost purely anecdote-based apprenticeship system to a system in which doctors were trained by learning the mechanisms of disease and serving apprenticeships in which they learned the “tools of the trade.” Records were kept on paper and, although classification of disorders has been critical to all areas of scientific study, attention to nomenclature has been largely unsystematic in medicine. In parallel, a complex array of computerized systems has been developed for the business side of medicine, with little connection to the actual delivery of care. The dissociation between clinical and billing systems reflects the incorrect idea, basic in medical training, that doctors, armed with knowledge of disease mechanisms, can practice medicine by using deductive reasoning with little need for empirical decision support. Most recently, the Internet and supporting information systems have revolutionized the nonmedical world. Compare the functioning of the banking industry versus that of the healthcare industry. Almost anyone with a bank account can withdraw funds or pay bills from anywhere on Earth via computer. Making sensitive information about people’s finances available is possible because of common nomenclature and data standards adopted by the finance industry. In contrast, the medical community is a haphazard mix of paper- and computer-based systems with multiple nomenclatures that do not allow the …