Government’s big data efforts are manifesting in new ways: When an ice storm threatened New Orleans in January, the city contacted residents with medical conditions, warning how they might soon be affected and advising to take preventative measures. Other cities send text messages to known parents, reminding them to get their children vaccinated.
These and other programs are the result of better intelligence on behalf of government, enabling agencies to perform their functions more effectively and helping citizens in the process. But some people view the programs as being somewhere between unsettling and invasive.
Emergency medical service providers and medical facilities in San Diego are sharing data to identify people who habitually dial 9-1-1 as a result of mental illness. In two years of operation, the San Diego Resource Access Program (RAP) reported curtailing such behavior among 51 such people, reducing costs by an estimated $314,306 and saving workers 263 hours of task time. The savings were the result of information sharing across various agencies, and while it’s hard to dispute the quantifiable benefits of such a program, privacy experts fight hard to preserve the anonymity of the public, particularly those compromised by mental afflictions.
In New Orleans, a health-care information exchange notifies primary care physicians when their patients are admitted to hospitals. The exchange also shares data with insurers so they can identify expensive patients, according to The New York Times. Officials reported that such programs are designed with privacy standards in mind, but such developments raise unprecedented scenarios, enabled by new technologies only recently.
The BioSense program, run by the Centers for Disease Control and Prevention (CDC), provides health officials at local, state and national levels a common platform that allows them to collect, share and evaluate patient data. The program is intended to give public health officials a view of data that spans across government agencies and jurisdictional boundaries, particularly when disasters occur, like the Deepwater Horizon oil spill. The New York Times reported that the program was created so officials could be proactive in finding patients with known mental health conditions or people with other health conditions who might be made particularly vulnerable by an event like a hurricane. Following Hurricane Sandy and Hurricane Katrina, government officials used the program to search out such individuals so they could verify their data and gauge reactions of those being contacted.
Some admit that the program sounds well-intentioned, but they object because such sharing of information is a violation of patient privacy.
“I think it’s invasive to use their information in this way,” Christy Dunaway, who works on emergency planning for the National Council on Independent Living, told The New York Times. One concern, she said, is that the same information that is used to find people with disabilities who might need help could also be used to discriminate against them. Other officials argued that there is always a balance between privacy and sharing information to save lives.
While such programs may be seem creepy or invasive to some, they tend to be created as responses to real need. Following Hurricane Sandy, many patients who relied on electric-powered medical equipment were faced with a potentially-fatal problem – they needed power before their battery back-ups ran out. Dr. Nicole Lurie, assistant health secretary for preparedness and response at Health and Human Services, told The New York Times that it’s the government’s job to be aware of people with such needs, and that if the local government can’t help them in a time of crisis, then the federal government should step in.
In New Orleans last June, local officials used Medicare records to identify the names and addresses of more than 600 beneficiaries who had been billed for oxygen equipment or ventilators. The New York Times reported that while a few people refused to open their doors when contacted by government officials checking to see if the residents were indeed using oxygen or a ventilator, the vast majority were grateful that someone was looking out for them.
The exercise was also revealing because in one neighborhood, a report published in the American Journal of Public Health shows that not one electronic breathing device user had a battery backup. More than half of those interviewed said they would probably need help during a hurricane, but only 15 of the 611 residents had actually enrolled in the city’s special needs registry.