The war on privacy
From the pages of In Business magazine.
This month, IB presents a business technology feature that’s an intentional departure from the usual boys-and-their-toys or girls-and-their-gadgets approach. With all the controversy generated from recent reportage on government intrusions, we thought an examination of privacy was in order.
One of the people we interviewed was Dr. Deborah Peel, founder of the Patient Privacy Rights Foundation, and she has a perspective worth sharing. Peel and others have been sounding the alarm — and alarm is an appropriate word — about the lack of medical privacy we have.
She tells a very frightening, and underreported, story about how patients’ control over their own medical information, control that was supposed to be established under the 1996 Health Insurance Portability and Accountability Act (HIPAA), was undermined by the Health and Human Services bureaucracy under President George W. Bush. In other words, we aren’t necessarily governed by elected officials to whom we, the governed, provide consent, but by less accountable federal bureaucrats.
Epic Systems CEO Judith Faulkner takes issue with Peel inside these pages, but Peel’s advocacy stems from her status as a boarded adult psychiatrist who has been practicing for 35 years. As a Freudian psychoanalyst, part of her training was to be analyzed herself, and the privacy erosion she sees is enough to put her back on the couch. That’s because privacy is essential for mental health treatment and, really, any kind of medical treatment.
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Just as surgeons need a sterile field to perform a successful operation, psychoanalysts need to assure their patients of privacy or they won’t bother to seek treatment. Amazingly, this wasn’t taught in medical school or residency; Peel learned it when she opened her practice and more than one patient asked, “If I pay you in cash, will you keep my records private?” Peel was shocked. “I had no idea they [the records] got out anywhere, but the insurers would share information with employers, which would lead to job discrimination, firing, and reputational harm,” she charged.
That was in the age of paper records. Imagine having your medical history in cyberspace, which brings us to the Affordable Care Act and a controversial “data hub” that is merging databases from the Internal Revenue Service, Homeland Security, and other federal agencies to help determine eligibility for ACA subsidies. In Peel’s view, the ACA isn’t helping the cause of privacy. “It’s predicated on data sharing,” she stated, “without our knowledge or consent.”
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