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Database Standardization, Linkage, and the Protection of Privacy
- The Regenstrief Institute for Health Care; Indiana University Medical Center; Indianapolis, IN 46202 Note: This article is one of a series of articles comprising an Annals of Internal Medicine supplement entitled “Measuring Quality, Outcomes, and Cost of Care Using Large Databases: The Sixth Regenstrief Conference.” To see a complete list of the articles included in this supplement, please view its Table of Contents.
In writing this summary, I was tempted to call on one of the mantras of the current generation: “reduce, reuse, recycle.” The authors of the preceding three articles all seek to reduce the need for expensive and time-consuming clinical trials that may be difficult or impossible to conduct by reusing data already available in existing databases and by recycling it into products not envisioned when the data were originally collected. The views expressed in the paper by Gostin suggest that perhaps this mantra should be expanded from three Rs to four in the context of health care data: “reduce, reuse, recycle responsibly.” Because of the need to address pressing health care issues, data collected for one reason can and should be used in ways not originally intended; however, researchers must consider the legal and ethical implications of such use. Irresponsible reuse and recycling is …
