base of scientific research and through the promotion of improvements in clinical practice and in the organization, financing and delivery of health care services" (U.S. Congress, 1989). In addition to its mandate to "conduct and support research, demonstration projects, evaluations, training, and the dissemination of information, on health care services and on systems for the delivery of such systems," AHCPR is specifically directed to support the improvement and supplementation of existing databases and the design and development of new databases for use in outcomes and effectiveness research.

More recently, several IOM studies have endorsed efforts to support, expand, and improve research and the knowledge base on efficacy, effectiveness, and outcomes of care (IOM, 1990b,c). Such efforts are part of a systematic endeavor to develop clinical practice guidelines and standards of care. All of these activities underscore the vastly increased demand for patient data that has emerged during the 1980s.

Maintaining Confidentiality

In contrast to these trends—an increased supply of and demand for patient data—is the absolute necessity to protect patient privacy. 12 The ancient principle of confidentiality—the obligation of health care professionals to avoid violating a patient's right to privacy—is affirmed by the American Medical Association (AMA) Council on Ethical and Judicial Affairs (1989).13 Thus, a significant challenge in creating future patient record systems is to achieve an appropriate balance between confidentiality and access by users with a need to know.14

12  

Privacy is the right of individuals to be left alone and to be protected against physical or psychological invasion or the misuse of their property. It includes "freedom from intrusion or observation into one's private affairs; the right to maintain control over certain personal information; and the freedom to act without outside interference" (Peck, 1984).

13  

"And whatsoever I shall see or hear in the course of my profession, as well as outside of my profession in my intercourse with men, if it be what should not be publicized abroad, I will never divulge, holding such things to be holy secrets" (Hippocratic Oath, as quoted in Small, 1989).

According to the AMA, "[t]he information disclosed to a physician during the course of the relationship between physician and patient is confidential to the greatest extent possible. The patient should feel free to make a full disclosure of information to the physician in order that the physician may most effectively provide needed services. The patient should be able to make this disclosure with the knowledge that the physician will respect the confidential nature of the communication" (AMA Council on Ethical and Judicial Affairs, 1989:21).

14  

Concerns about the privacy of information are not limited to health care data. The 1977 report, Personal Privacy in an Information Society , cited consumer credit, depository, insurance, employment, and education data as all needing protection (Privacy Protection Study Commission, 1977).



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