Healthcare Technology Featured Article

June 08, 2012

De-Identifying Medical Data: The Pros and Cons


Would you like some degree of control over your de-identified data, or data that is no longer protected health information? According to a story by Health Management Data, HIPAA rules are set up to not only permit use of such data, but actually encourage it, according to Marcy Wilder, a privacy and information management attorney at the law firm Hogan Lovells, at a recent discussion on regulation.

Why would you ever agree to de-identify your data? The story reports that people do benefit from de-identified data in many ways, such as disease surveillance.

Health Management Data reported that Mark Rothstein, chair of law and medicine at the University of Louisville School of Medicine, said the interests of the individual in regard to his or her de-identified data still must be addressed.

“It’s my information and I should decide who uses it,” he said.

The ability to collect and store information about individuals and their actions and habits is easier than ever before, thanks to advances in information technology that allows the storage, cataloging and use of such information.

But who needs all this unprotected health data? Sometimes it’s used to keep individuals anonymous in data sets, according to Valerie Vogel, who gives the example of a researcher who may need to know that certain actions were all taken by the same individual, in order to form conclusions about how individuals use the data or service.

In its own way, she wrote in “Guidelines for Data De-Identification or Anonymization," in some situations, de-identified or anonymized data could be re-engineered to identify the underlying data subjects, allowing recipients of the data to have access to other data sets or methods that would permit re-identifying the data. But de-identifying data to do research can also leave individuals studied within that data set anonymous; there are inherent privacy risks.

Another issue discussed at the Health Privacy Summit in Washington was the fact that health privacy laws have not caught up with technological advances, and that will affect policies governing disclosure of health information.

The Office of the National Coordinator for Health Information Technology (ONC) is funding a metadata tagging (descriptions of webpages) pilot project, but the market isn’t ready for uniform application, said Joy Pritts, chief privacy officer at ONC, in the story. “It is something we are looking at.”

But Pritts also reminded the audience that many patients want their providers to have access to their information and “are pretty mad” when they learn that providers haven’t seen important information, the story reports.

Sometimes privacy is at risk with things as unlikely as implantable medical devices that automatically transmit information, increasing the need for stronger privacy protections.




Edited by Braden Becker
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