A disturbing look at the threat to privacy created by the lucrative and growing health care data-mining industry.
In his previous book, What Stays in Vegas: The World of Personal Data—Lifeblood of Big Business—and the End of Privacy as We Know It (2014), Tanner, a writer in residence at Harvard University’s Institute for Quantitative Social Science, took a broad look at the enterprises that gather and sell computer-generated data on consumers. Here, he zeroes in on the trade in patient medical information, discovering that an industry dealing in intimate personal information is very closemouthed about its own inner workings. Tanner is a persistent and experienced researcher, however, and the information he gleans paints an alarming picture. As doctors and hospitals adopt electronic health records, companies operating these systems sell the information to data-mining enterprises, who in turn are making big money marketing the data on millions of patients to insurers, makers of medical devices, drug manufacturers, physicians, and attorneys. Although the patient’s identity is removed from a record, enough information is retained that can reidentify the person. Through his own personal experience in changing health insurance plans, Tanner reveals how patients have little say in how their data will be shared. He asserts that our health care system has failed to provide easy access to comprehensive medical records by doctors, who need it for treatment of their patients, and he rebuts the claim by data miners that the information they gather advances science by providing valuable information to medical researchers. Finally, he takes a stab at reforming the system, a task that first requires that patients know that this threat to their privacy exists and how it affects them, information that Tanner provides in detail.
A thorough report, carefully researched and well-documented, aimed at both general readers and policymakers.