Privacy and Health Research. Research to Evaluate and Improve Practices


Much research is performed to evaluate public-health programs, clinical practices, and the effects of innovations.50

Outcomes research is performed to analyze "what works best," so to speak, and for what subset of persons and situations, and under what conditions, and perhaps at what costs.51 Some of this research focuses on individuals, and some on populations. It has to do with whether various preventive or other healthcare services are available, and with how effectively they are used. It examines large samples of real cases, analyzes them statistically, and structures the data in analytic frameworks. Thus outcomes research informs the planning of public-health services delivery (such as smoking-cessation programs for pregnant women), for instance, and the optimal path through branching clinical judgments (what to do for patients with gallstones...).

Clinical practice guidelines have been prepared by many governmental, professional, patient, and managed-care organizations, based on outcomes studies and other evaluative research.

Leading roles have been played by the U.S. Agency for Health Care Policy and Research, which has prepared guidelines on problems ranging from sickle cell disease, to middle ear infections in children, to prostate enlargement. The Agency continues to work to advance the methods of practice evaluation and improvement.52

Drug utilization review, the analysis and critiquing of the use of pharmaceuticals in particular clinical settings (such as the use of antibiotics before and after surgery), provides facts that, along with cost-effectiveness and other considerations, help optimize use of drugs. Such review, along with other factors, supports the development of formularies, lists of pharma- ceuticals that are approved for dispensing in the institution, and recommendations for use. Such review may determine whether the drugs qualify for cost reimbursement. Analogous studies are performed on surgical techniques, anesthetics, and use of diagnostic and other services.

Follow-up tracking follows the consequences of interventions. The U.S. Food and Drug Administration requires tracking of people in whom medical devices (such as artificial joints, cardiac pacemakers, heart valves, breast implants, and testicular prostheses) have been implanted. The patients are urged to keep themselves registered. The tracking enhances the patients' care, in that it allows communication with them to advise of relevant new knowledge or warn them to see their doctor or take other protective steps. Of course also it provides data for research on patterns of use, outcomes, costs, patient attitudes about the implants, and other factors, which helps improve the devices and their use.

Quality-of-life studies and patient-attitude surveys use interviews, focus-group discussions, and other social-scientific methods to enquire into the valuations people make of various health states and treatments.

(50) A very readable set of case essays is Howard S. Frazier and Frederick Mosteller, Medicine Worth Paying For: Assessing Medical Innovations (Harvard University Press, Cambridge, Massachusetts and London, 1995).

(51) Michael F. Drummond, Greg L. Stoddart, and George W. Torrance, Methods for the Economic Evaluation of Health Care Programs(Oxford Medical Publications, Oxford, 1992).

(52) The Guidelines and much other related information from the AHCPR are available on the Internet at < >.