Protecting Data Privacy in Health Services Research

Health services research (HSR) exemplifies some of the greatest hopes and greatest fears for collecting and analyzing computerized personal health information. Information routinely collected in the course of providing and paying for health care can be used by researchers to investigate the relative effectiveness of alternative clinical interventions, of alternative methods of organizing, delivering, and paying for health care, and of a variety of health care policies. Such research may improve the effectiveness and efficiency of health care. For example, HSR has identified significant variation in outcomes of care for a specific health problem according to the specialty of the clinician, type of insurance or reimbursement, and gender or ethnicity of the patient. At the same time, using personal health information for such research raises concerns about privacy (whether participants should provide the data) and confidentiality (how the data may be used later). Such concerns are intensified because of public concerns that confidentiality is being eroded for many types of computerized personal information, ranging from credit card purchases to addresses on drivers' licenses. Concerns about maintaining confidentiality of medical information are particularly important because patients disclose sensitive information to physicians that they may not tell close relatives and friends, such as information about their mental health, alcohol and substance abuse, and sexual practices. Confidentiality of medical information used in HSR is particularly important because information on many individuals may be analyzed by researchers without their knowledge or consent.

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