While Obamacare and privacy concerns have dominated headlines over the past year after NSA leaker Edward Snowden's revelations, the government quietly has been amassing data mined from healthcare claims to identify people who might require assistance in natural disasters or other emergencies, The New York Times reports
A pilot federal program has been tested in New Orleans to see if Medicare claims data correctly identified people needing electricity-dependent medical equipment, such as oxygen concentrators or ventilators, The American Journal of Public Health reported
in an abstract published in March. Officials found that 93 percent of the information gleaned — and provided to the local health department — was accurate.
According to the Times, New Orleans officials in June reacted to news of a mock hurricane. They were given the names of 611 residents who rely on things like kidney dialysis or breathing machines. Police, fire, public health personnel, and volunteers were dispatched to one-third of the homes to see if the information was reliable. It was.
Had it been an actual emergency, the patients would have been advised to get early treatment in the event clinics had to close or helped them find alternative power sources should electricity fail.
The test also exposed some troubling information. Emergency workers learned there was not one person in a particular neighborhood with a backup battery for an electronic breathing device, and more than half of those asked indicated they would require assistance if a hurricane struck, yet only 15 of the 611 were enrolled in a city registry for special needs assistance, according to the Times.
The program is one of many — both public and private — being tested around the country, according to the Times, that seeks to mine individuals' personal medical information to improve emergency response, or in some cases, to provide more targeted general medical care.
Some cities have begun sending text messages reminding parents to vaccinate their children, while other places allow emergency medical services to identify and share information on "frequent fliers" – people who regularly summon ambulances, which are expensive.
"In New Orleans, a health care information exchange notifies primary care physicians when their patients are admitted to hospitals, offers insurers the ability to sift the data for 'high-cost users' and permits authorized individuals to 'break the glass' in emergencies — viewing records of patients who have not previously given permission and cannot speak for themselves," the Times reports.
The Medicare program has already been tested in three places – New Orleans; Broome County, N.Y.; and in Arizona, according to the Times – and is preparing to go nationwide, said Dr. Nicole Lurie, assistant health secretary for preparedness and response.
The response from the vulnerable populations and healthcare advocates for the disabled in New Orleans, for example, was overwhelmingly positive, Lurie said.
But there are those who are troubled by increasingly blurred privacy lines.
"I think it's invasive to use their information in this way," Christy Dunaway of the National Council on Independent Living, which supports disabled people living at home, told the Times.
She noted the concern she and others have that identified individuals "could be forced to evacuate to shelters that cannot accommodate people with disabilities, or that incomplete data could provide false assurances of government rescue."
The program goes to great lengths to protect patient privacy, according to Dr. Karen DeSalvo, one of the developers of Medicare's pilot program.
"This is the next chapter of what good data can do for good purposes," she said. "We are all going to have to, I'm hoping, come to some consensus with how we're balancing privacy and security with the need to save somebody's life."
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