. "Health Databases and Health Database Organizations: Uses, Benefits, and Concerns." Health Data in the Information Age: Use, Disclosure, and Privacy. Washington, DC: The National Academies Press, 1994.
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duct. They cannot, of course, police the validity of data when used by others for purposes over which the HDOs have no a priori control.
Until HDOs can demonstrate the quality of their data, the committee cautions that their proponents must guard against promising too much in the early years, particularly in the area of improving quality of care and conducting research on the appropriateness and effectiveness of health services. The committee returns to this point in Chapter 4 in a discussion of data protection and data integrity.
As many investigators have pointed out, the absence of sufficient clinical information in most databases today (and likely for tomorrow) is a critical limitation (Roos et al., 1989; Hannan et al., 1992; Chassin, 1993b; Krakauer and Jacoby, 1993). Efforts to acquire such information through manual abstraction of relevant information in hospital records, which is the basis of various patient classification programs (e.g., Medis Groups or HCFA's proposed Uniform Clinical Data Set), are costly and time-consuming. Some means of obtaining such information more directly from patient records will be needed.
Clinical data should be obtained, whenever practical, to validate analyses. The committee does not regard the clinical data found in medical records, whether computerized or not, as always sufficiently comprehensive, accurate, or legible to characterize them as a "gold standard," but they are a valuable, and sometimes indispensable, touchstone against which to judge the less rich administrative data on which many types of health policy and health services research are and must be based.
The validity of elements in a database must be matched with the kinds of inferences that can be drawn. The committee believes that the best method of enhancing the comprehensiveness of HDO databases and the accuracy and completeness of data elements is to move toward CPRs in which the desired variables themselves, rather than high-level abstraction and proxy coding systems, could be accessed. This committee does not wish to convey the impression that the transition to CPR systems is anything but an extraordinarily difficult task. Although the progress made in establishing a CPR Institute is laudable, much remains to be done for that organization to realize even the main objectives set forth for it in the IOM report on CPRs and CPR systems. In addition, planning efforts by the Computer Science and Telecommunications Board (a unit of the Commission on Physical Sciences, Mathematics, and Applications of the National Research Council) on the national information infrastructure and its role in health care (and health care reform) make clear that both the health care and the computer and information sciences communities have a considerable way to go even in agreeing on details about the directions that policies and