the mechanisms used to provide protection may be different. Health care organizations must decide who can have access to health information systems and whose needs for access are legitimate. Individuals assume that they have the right to keep information about their health private, yet most would acknowledge that health care providers need access to pertinent facts about a patient's history, test results, allergies, symptoms, and response to therapy in order to provide advice and make decisions that will be in the best interests of the individual's health. Others, such as researchers, health insurers, life insurance companies, employers, and marketers of health products, all have a legitimate need to access some types of health care information. Clinical researchers and epidemiologists need health information to answer questions about the effectiveness of specific therapies, patterns of health risks, behavioral risks, environmental hazards, or genetic predisposition for a disease or condition (e.g., birth defects). Health insurers seek to combat rising costs of care by using large amounts of patient data in order to judge the appropriateness of medical procedures.18 Life insurance companies created the Medical Information Bureau Inc. to improve the underwriting process and help detect possible instances of fraud in the use of health information (Box 1.1). Drug companies want to know who is taking which drug so that they can conduct postmarketing surveillance to develop marketing strategies. A growing number of companies serve as information clearinghouses, collecting data from any number of sources and reselling it to customers in search of efficiency and savings.

In certain instances the desire for access transcends health care decisions and economic incentives. Foreign governments, voters, and business leaders are interested in the health of politicians, celebrities, and prominent citizens. A recent book, Hidden Illness in the White House,19 and a recent film, The Madness of King George, are illustrations of the tension between an individual's desire for privacy and another group's claims of legitimate access to information concerning the health of its leaders. In Russia, one of Boris Yeltsin's surgeons acknowledged that Yeltsin had

18  

A recent news article described the payer point of view. ''They [the privacy advocates and patients] think that we are seeking personal detail. But we're seeking clinical accountability. Ten years ago, there was no accountability. They sent in a claim and it was paid. Today, we ask for information .... "(Ian Schaffer, Medical Director, Value Behavioral Health, as quoted in Riley, John, 1996, "When You Can't Keep a Secret," NY Newsday, April 1, p. A36. The same article (at p. A37) describes a case in which a U.S. Circuit court of appeals concluded, "We hold that a self-insured employer's need for access to employee prescription records under its health plan outweighs an employee's interest in keeping his prescription drug purchases confidential.")

19  

Crispell, Kenneth A., and Carlos F. Gomez. 1988. Hidden Illness in the White House. Duke University Press, Durham, N.C.



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