Privacy and Health Research. Secondary Use of Data, and Data Linking


Secondary use is, as it sounds, use of data subsequent to the original use. As this Report has affirmed, much highly beneficial health research depends on it. The research may be performed either by the parties who initially collected the data, or by others, and either for reasons similar to the original ones, or for very different purposes. Most of the ethical and legal issues have to do with consent of the data-subject, and protections.

As databases are maturing and increasing in size and quality, their appeal as research resources also is growing. Thus the databases of healthcare finance systems and managed-care organizations, among others, are much in demand. These large collections of standardized, computerized data have much information to yield. But so do smaller, highly specialized data collections.

The data hunger of managed care, and of national healthcare systems, is insatiable. Ultimately the public will benefit from research studying the systems themselves as systems, as well as from research that uses data in the systems for external purposes. Much of this research will have to be performed retrospectively.

The privacy concerns surrounding secondary-research use begin the same way as for all research: Must the data be used in personally identifiable form, or can they be used in anonymized or key-coded form? If the data need to be transposed from identified to non- identifiable form, can this be performed effectively and efficiently? Usually these questions can be answered straightforwardly.

If it is decided that data must be used in personally identifiable form, then the most difficult issue is consent. Have the subjects agreed in advance to the new use, or, should they be approached and asked for new consent? Going back to the data-subjects to ask for re-consent may be difficult or even impossible—people relocate, change their names, change their healthcare providers, die—and it may be costly. And obviously even the act of going back to the subjects has to be done without violating their privacy.