Privacy advocate Deborah Peel: Government HIT initiatives strip patients of data control

Government initiatives to achieve interoperability, improve data-sharing and promote the 21st Century Cures bill are "more of the same old, same old measures to increase the spread and use" of personal data while taking control out of patients' hands, according to privacy advocate Deborah Peel, M.D.

"The problems of interoperability of data, the 21st Century Cures bill and the calls to create a national patient identifier are all proposals to solve today's problems with yesterday's technology--pressure to open up commercial use of health information. This doesn't have anything to do with research and cures," she tells HealthcareInfoSecurity in a recent interview.

Peel says the IT infrastructure in healthcare is "designed to produce problems forever"--it doesn't scale to handle massive amounts of data and puts the data of millions of patients at risk from breaches and cyberattacks. 

Interoperability in the paper age happened because the patient directed it, she adds. You went to doctor A, who sent you to specialist B and conveyed your information by phone or fax. It wasn't necessarily fast, but the information got there.

"The promise of electronic health information was supposed to be to help with treatment, not to create massive, hidden business models where people are using your data for purposes we don't even know about. ... Now, neither the physicians or the patients are at the center driving this process," she says. "The promise was that the doctors would get information faster, but it's failed miserably and created a giant industry of hidden data users and sellers." 

The government, however, is not the only one calling for improved interoperability and better sharing of patient information. The American Hospital Association has formed an Interoperability Advisory Group, made up of 24 members from health systems, hospitals and medical centers. In a report recently released by the group, members say that interoperability is imperative not only to improve care, but "also for engaging patients and supporting new models of care."

At the same time, Peel is not the only one raising red flags about the 21st Century Cures bill. Industry professionals also are concerned about a provision that would allow a hospital to share all research conducted as part of a hospital's operations with any other covered entity, such as a pharmaceutical company or insurer without asking each individual patient's consent. Another provision would allow the sale of health information for research purposes to pharmaceutical companies and medical device makers.

To learn more:
- here's the interview

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