Health Services Research: Public Benefits, Personal Privacy, and Proprietary Interests

As a society, we benefit considerably from health services research in understanding use, outcomes, patterns of practice, and determinants of cost of health care. Health services research has helped to create and evaluate Medicare's Prospective Payment System [1]; identify potential risks for undertreatment in systems of care that pay providers solely on the basis of capitation [2]; and evaluate the cost-effectiveness of pharmaceuticals, surgical procedures, and other important medical interventions [3, 4].

Health services research develops methods and measures to assess the quality of care provided by health plans, hospitals, physician groups, and individual physicians. Recognizing the probabilistic nature of health outcomes, health services research seeks to separate systematic variation (that is, variation in quality) from random variation in outcomes. Because patients with different clinical and socioeconomic characteristics have different prognoses, health services research seeks to adjust observed health outcomes for differences in underlying medical risks so that comparisons of variations in quality are fair. If relations between particular patterns of care and high-quality outcomes can be identified, health services research will help to provide a scientific foundation for evidence-based medicine. Finally, health services research evaluates the effects of different organizational, provider payment, and health insurance structures on patients' ability to receive quality care at reasonable cost and on an equitable basis.

To achieve these goals, health services researchers statistically analyze large databases that contain substantial amounts of personal information often obtained from various sources. Large databases are essential for separating systematic variation from random variation. Detailed personal information, both clinical and socioeconomic, is critical for adjusting for differences in underlying risks.

For those who work with such databases, the proposal by government [5] and medical [6] authorities to establish a health information infrastructure is of more than passing interest. We define the health information infrastructure as …