Your private medical data is for sale – and it’s driving a business worth billions
Your medical data is for sale – all of it. Adam Tanner, a fellow at Harvard’s institute for quantitative social science and author of a new book on the topic, Our Bodies, Our Data, said that patients generally don’t know that their most personal information – what diseases they test positive for, what surgeries they have had – is the stuff of multibillion-dollar business.
But although the data is nominally stripped of personally identifying information, data miners and brokers are working tirelessly to aggregate detailed dossiers on individual patients; the patients are merely called “24601” instead of “Jean Valjean”.
At the doctor’s office, Tanner told the Guardian, “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 gender, age, particular ailments, and neighborhood. Then, Tanner said, data miners cross-reference that information with data from pharmacies about who they sell prescriptions to, culled by big drugstore chains like Rite Aid and CVS.
In a new report from the Century Foundation released on Tuesday, Tanner quotes Per Lofberg of CVS: “The patient is not really a component of this because their name and connection to the prescription have been stripped off.”
But other forms of data, like information from fitness devices and search engines, are completely unregulated and have identities and addresses attached. A third kind of data called “predictive analytics” cross-references the other two and makes predictions about behavior with what Tanner calls “a surprising degree of accuracy”.
None of this technically violates the health insurance portability and accountability act, or Hipaa, Tanner writes. But the techniques do render the protections of Hipaa largely toothless. “Data scientists can now circumvent Hipaa’s privacy protections by making very sophisticated guesses, marrying anonymized patient dossiers with named consumer profiles available elsewhere – with a surprising degree of accuracy,” says the study.
