Reviews and Notes: Health Data in the Information Age: Use, Disclosure, and Privacy

Health Data in the Information Age: Use, Disclosure, and Privacy

MS Donaldson and KN Lohr; eds. Committee on Regional Health Data Networks, Division of Health Care Services, Institute of Medicine. Washington, DC: National Acad Pr; 1994. $24.95. ISBN 0-309049-95-4. Order phone 800-624-6242.

Health Data in the Information Age is both readable and a useful reference. It is primarily directed to those who would formulate legislation or create rules and regulations about health care information, but it is also of particular value to those who are involved in the implementation or administration of health-related databases or of other databases of a personal nature.

The Committee reviews the issues surrounding security, confidentiality, and privacy with regard to various kinds of information associated with health care under many circumstances; it explains the current states of affairs in the United States; and it makes explicit recommendations as to what would be required to meet a set of fair policy standards. These recommendations are specific and cogent and are supported by detailed argument and explanation. No vague or nebulous assertions are made (for example, the expression "except as required by law" is not used). Rather, exactly which exceptions might be entertained under what circumstances and why are spelled out. This attention to detail makes the content too rich to be summarized directly.

Many have a stake in this relatively new domain (as they do in health care in general). Many of these persons are represented on the Committee itself. To manage their different perspectives, members of the Committee wisely choose to first establish a common ground of concerns that are shared by all. They then discuss the problems of data collection and distribution from each perspective separately, elucidating points of contention. Modern medical records in electronic form have the potential to become a longitudinal history of patients that can also identify the successes and failures of medical treatment. Thus, there are, in addition to the evident concerns of patients themselves for the confidentiality of their own health status, legitimate professional and institutional concerns about how patient data might be used to describe professional performance or about how data might be misused to advocate a predefined political position with apparent authority.

The Committee identifies numerous loopholes open to those who would manipulate "the system" using sharp legal practice or frank ethical violations. In the real geographical world, much variety must be overcome. Laws vary widely from state to state and now, through electronic networking, new kinds of questions arise as reports and records are transferred across jurisdictional lines. Additional potential loopholes could be created inadvertently, for example, through the use of the Social Security number as a universal identifier. Although at first glance this would appear to be a practical solution to the need for an index to all patients, its shortcomings and dangers are persuasively set out by the Committee: no numbers for newborns or persons from countries other than the United States; no algorithm to internally check the digits; numerous false identities; and a dangerous link to databases of a financial nature. Much stems from the general agreement that health records must begin with a presumption of privacy and that limits must be placed on the present carte blanche that is often given by patients to insurance agents (who assess risk but may also harvest and store information for other purposes).

The discussion extends beyond needs to definitional and technical specifications that can turn such needs into procedural and architectural requirements. As each point is made, an attempt is made to consider the counterarguments. For this, definitional gradations are introduced in a way that makes logical sense and avoids the destructive black-and-white juxtapositions that often suggest that if an inch is given, all will be lost; use of these juxtapositions demonizes some positions while favoring others and leads to bitterly divisive, but unnecessary, disputes.

Would that other policy issues in health care today were approached with the fairness, insight, and even-handedness evident here. That these qualities are achievable offers a paradigm for other policy studies. Indeed, this book serves as an object lesson to show that a committee, properly constructed and motivated, coupled with a guiding editorial hand, can produce a race horse rather than a camel. The success of this work suggests that this Committee, reflecting on itself, might write a monograph on how to organize effective committees to address policy issues with potentially divisive consequences.