By Mark Terry
Despite all the good a data sharing program developed and implemented by the federal government to identify vulnerable patients during emergencies and disasters can provide, the privacy and security of information used looms as a major concern, the New York Times has reported.
The program, developed by the U.S. Department of Health & Human Services, mines Medicare health insurance records in order to help identify people who may be vulnerable during regional emergencies such as floods, tornadoes and hurricanes. The impetus for the program came after a 2011 tornado struck Tuscaloosa, Alabama.
HHS, of course, is aware of the significant privacy issues. "There are a lot of sensitivities involved here," Kristen Finne, a senior policy analyst at HHS, told the Times. "When we started this idea, there was a lot of 'are you crazy?'" She said, however, that program was designed to comply with privacy laws.
Still, a number of critics say they think it is crazy.
"I think it's invasive to use their information in this way," Christy Dunaway, an emergency planner for the National Council on Independent Living, told the Times.
National Coordinator for Health IT Karen DeSalvo, however, told the Times that the programs benefits outweigh the risks. "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."
Existing efforts to ensure the privacy of patient health information may be inadequate in the era of big data, according to a recently published White House report.
The 85-page report "Big Data: Seizing Opportunities, Preserving Values" calls predictive medicine the ultimate application of big data in health, noting its potential to prevent disease or tackle it early based on a person's health status and genetic information. The report also says that big data has the potential to affect future generations and to extrapolate risk to others, singly or as groups.
However, as more data is collected, stored and used, the report advocates a framework for responsible use of data, noting information intended for one use could cause harm when used for a different purpose.
Meanwhile, a report published last summer by the Citizens' Council for Health Freedom says that an array of collection systems have been created under the banner of "public health" and fall outside the protections that most people assume HIPAA covers.
"What we're trying to tell the public--and what we're trying to show the public--is how state government is capturing medical record information and tracking patients from birth to death, all in the name of 'public health,'" Twila Brase, co-founder of CCHF, said of the report.
To learn more:
- read the New York Times article
Big data may require more privacy protections
Consumer group: States collecting health data without consent
How HIEs can improve disaster planning
States collaborate to exchange data during disaster
NIH big data effort focuses on better knowledge from existing data
Privacy could 'crash' big data if not done right