Beware: Your Private Medical Data Could Be on Sale

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Did you know that your medical data is up for sale and is feeding multibillion-dollar business? Data miners and brokers can make detailed dossiers on individual patients even when the information is anonymous. They are able to do this by cross-referencing the anonymous data with other sources, according to The Guardian.

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All your medical data is for sale

Adam Tanner, author of the new book Our Bodies, Our Data and a fellow at Harvard’s Institute for Quantitative Social Science, said that generally patients do not know that their most personal data is the stuff of multi-billion-dollar business. Tanner says the data about what diseases patients test positive for and what surgeries they have had is all for sale.

Though the data may be stripped of personal identifying information, data brokers and miners work tirelessly to build up detailed dossiers on individual patients, says The Guardian. Tanner told the Guardian that at the doctor’s office, “you close the door and you think, I’m telling my doctor my most intimate medical secrets, and only my doctor knows about it. But it’s sold commercially.”

Patients are reduced to age, neighborhood, particular ailments and gender. Data miners then cross-reference that information with data from pharmacies about who they sell medicines to, said Tanner.

“The patient is not really a component of this because their name and connection to the prescription have been stripped off,” said Tanner, quoting Per Lofberg of CVS in a new report from the Century Foundation released on Tuesday.

However, other forms of information, like data from search engines and fitness devices, are completely unregulated and have addresses and identities attached. According to Tanner, another kind of data is “predictive analytics,” which cross-references the other two and makes predictions about the behavior with a “surprising degree of accuracy.”

No violation of HIPAA

Tanner notes that technically, none of this violates HIPAA or (the Health Insurance Portability and Accountability Act). However, the techniques do leave the protections of HIPPA largely useless.

“The problem over time is that as you have more and more information, there’s more and more about people who might be,” Tanner said.

Many companies are trading in medical data, including IMS Health, which Tanner names most prominently in the Century Foundation report. Also General Electric and IBM Watson have businesses in patient information, notes The Guardian.

Tanner says that this issue must be raised, as data miners and brokers do not want to talk about it because it is a multi-billion-dollar trade. They may say that the data is important for the advancement in science, but “they don’t talk about the real reason, which is marketing and sales.”

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