States and Localities May Soon Mine Personal Health Data to Find the Vulnerable in Emergencies
The phone calls were part Big Brother, part benevolent parent. When a rare ice storm threatened New Orleans in January, some residents heard from a city official who had gained access to their private medical information. Kidney dialysis patients were advised to seek early treatment because clinics would be closing. Others who rely on breathing machines at home were told how to find help if the power went out.
Those warnings resulted from vast volumes of government data. For the first time, federal officials scoured Medicare health insurance claims to identify potentially vulnerable people and share their names with local public health authorities for outreach during emergencies and disaster drills.
The program is just one of a growing number of public and corporate efforts to take health information far beyond the doctor’s office, offering the promise of better care but also raising concerns about patient privacy.
In some cities, text messages remind parents to get their children vaccinated. Elsewhere, emergency medical services sift records to identify — sometimes to law enforcement officials — “frequent fliers” who take repeated, costly ambulance trips. 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. And a federal program allows data sharing with public health officials to monitor “mental health conditions” and other illnesses in hazardous situations, like the Deepwater Horizon oil spill.
“There are a lot of sensitivities involved here,” said Kristen Finne, a senior policy analyst at the Department of Health and Human Services. “When we started this idea,” she said, referring to using Medicare data for disaster assistance, “there was a lot of ‘are you crazy?’ ”
Ms. Finne noted that the program was painstakingly designed to comply with privacy laws.
Aspects of the Medicare program were tested in New Orleans; in Broome County, N.Y., which includes Binghamton; and in Arizona. The program was presented to state and local public health officials last month. “We are now moving to scale this really across the country,” said Dr. Nicole Lurie, the assistant health secretary for preparedness and response.