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What your phone calls might say about your health

June 9, 2013

    Dan Diamond, Managing Editor

    The ongoing deluge of secret leaks about government surveillance programs remains a huge topic of conversation this weekend (although presumably, not over the telephone).

    Looking through the prism of PRISM—and the NSA's other data-mining efforts—it's worth pondering the ramifications for health care. I thought my colleague Chas Roades raised a cogent point on Friday.

    Here are two ways to think about those issues.

    1. Traditional concerns around health data privacy are problematic, persistent.

    This is a mix of the old questions (are HIPAA's rules sufficiently comprehensive?) and the new. For example, whether states are putting privacy at risk by selling hospital records. Or whether companies should be allowed to share your personal fitness data with your employer.

    Writing at FierceHealthIT, Dan Bowman summarized how consumer advocates are fretting over patients' lack of consent and control.

    "We're nowhere near where we should be as far as consumer access to their own medical information to find out where it [goes] and to exercise control over it," according to David Jacobs, an attorney with the Electronic Privacy Information Center who spoke at last week's Patient Privacy Rights summit.

    Meanwhile, hospitals and health systems are working to protect their data, but it's an ongoing war against inevitability. So much so that providers are increasingly buying data-breach insurance, out of practical considerations: 94% of surveyed organizations reported data security incidents in the past two years.

    2. Government surveillance programs point up new data-mining concerns.

    But the NSA monitoring programs focus on collecting "meta" data—not the actual procedures you've undergone, but merely the records of things you searched for online, or people you telephoned.

    What can this metadata reveal? Plenty about your health, experts argue; simply knowing who you're calling can be just as revealing as what you say.

    If you can track a series of calls, one privacy expert tells tells the New Yorker's Jane Mayer, "you know exactly what is happening—you don’t need the content.”

    "They know you spoke with an HIV testing service, then your doctor, then your health insurance company in the same hour," Kurt Opsahl of the Electronic Frontier Foundation adds at Gizmodo. "Metadata provides enough context to know some of the most intimate details of your lives."

    Some public officials do share this wariness. As consumer protection director at the Federal Trade Commission, David Vladeck began an inquiry into data brokers' practices, concerned that algorithms that mined for data patterns could create unfair stereotypes. (Vladeck recently stepped down.) For example, "whether someone would be classified as a health risk just because they bought products linked to an increased chance of heart attack," the Associated Press reports.

    To be clear, there's no indication that any of this data is being used in this way. And given the sheer volume of data that the government is trying to collect—and the priority of national-security concerns over, say, tracking if a 50-year-old man is searching Google for information about his prostate—mining for consumers' health patterns would seem to be fairly low priority, at least for the foreseeable future.

    Despite his own fears, Vladeck has faith in the system.

    "There are checks in the judicial system and in Congress" on the power of agencies like the NSA, he told the Associated Press.

    "If you believe in the way our government is supposed to work, then you should have some faith that those checks are meaningful. If you are skeptical about government, then you probably don't think that kind of oversight means anything."

    On the Advisory Board blogs

    The Reading Room: Shaun Lillard looks at CMS's decision to release charge data for outpatient procedures, and what that means for imaging.

    Care Transformation Center blog: Bonnie Jin reviews five insights on how to elevate care management, such as where to target your initial efforts.

    Toward Accountable Payment: Are we at the long-awaited tipping point for fee-for-service? More providers are taking on risk, Jordan Stone notes, and a new survey reveals just how much attitudes have changed around payment.

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