Why our personal health data will become less private

I have been following  the news about the National Security Agency (NSA) access to our phone records with great interest.  If we as a society don’t sort some of this out, we’ll see a repeat in the health sector a few years from now.

These discussions seem to pivot on issues of population-level safety vs. personal liberty, and on trust vs. suspicion re: how much of the process is driven by machine learning vs. individuals.

It is interesting that the story about the scanning of phone records came out close to reports about the IRS targeting certain non-profits.  The two are quite incendiary when it comes to paranoia around privacy.

As a Boston area resident, I was also quite puzzled by criticisms that our surveillance processes were not good enough to prevent the marathon bombings.  I have to wonder if these same folks were then chafing at the possibility of having their own phone records scanned. What is good for the prospective terrorist is bad for the average citizen, I guess.  This logic assumes we know who all of those prospective terrorists are and thus we should just keep track of them and leave Joe Average alone.  Can it get any more naive than that?

To the government’s credit, they have sought to clarify how the phone records scanning program is automated and that this sort of thing has been going on for years.  Those making noise seem to think that some group of unauthorized employees is pouring over our phone records, one by one, to pick out embarrassing or incriminating data about us.  Seems far-fetched to me, but I can see some of this fear after the IRS debacle.

The best stories on this, though, have contrasted the issue I raised above — population-level safety vs. individual liberty.  The NSA has pointed out in a number of places how many terrorist attacks were thwarted because they had access to these phone records.  This seems like a good thing to me.  It makes me want to ask, “If you aren’t participating in criminal activities why do you care so much that the government has access to these records?”  It’s a rhetorical question, but worth pondering at some level.

So how does this relate to health and connected health?  It is parallel in many ways to the conversation playing out right now.  At the Center for Connected Health, one of our programs, called Diabetes Connect, allows patients with diabetes to automatically upload their glucose readings and get periodic feedback from a diabetes nurse educator.  Some patients like the feedback loop and, as a population, they all do better.  However, some stop using the system entirely.  They say things like, “I don’t want my doctor to know that my sugars are running high” or “it reminds me that I’m sick so I’m not doing it anymore.”

This psychology is, to me, reminiscent of the individual who says “protect my privacy at all costs, even if we might miss a few terrorist bombings.”

Connected health and its intendant feedback loops create the opportunity for goal setting and achievement for the motivated individual, but they also create an accountability that can make some people uneasy.  By way of analogy, I don’t mind the NSA reviewing my phone records because I have nothing to hide.

The direction in which our Center is headed involves capturing lots of data about you (not unlike the government scanning your phone records) and using that data to generate customized, motivational messages to keep you engaged in improving your health.

The logical conclusion may be scary to some.  When we cross the threshold to mobile purchasing, for instance, we’ll know if you bought a Dunkin’ Donuts breakfast sandwich for breakfast and a big slice of cheesecake for lunch.  If you have diabetes, these choices might have dire downstream consequences.  Is this level of monitoring too invasive? Remember, society has to pay the cost of your diabetic retinopathy and your chronic renal failure if you don’t care for your diabetes.  This is why I say the analogy of tension between population-level safety and individual liberty is a ripe one.

In health care, I can envision having a system where one trades privacy for premium fees.  You can keep all of your data and behaviors private if you pay a higher insurance premium.  There are some precedents for this in the auto industry.  I don’t know what the answer is with respect to phone surveillance and terrorism.

As a society, we need to be better educated as to how data can be used to our advantage, whether it be our phone records to identify potential crime or our health data to prevent disease like hypertension or diabetes.  In the case of health care, it’s not just about doctors or insurers “spying” on you.  Our own personal health data can be a treasure trove of information that can help us all live healthier, better lives.

How do you see it?

Joseph Kvedar is director, Center for Connected Health, Partners HealthCare. He blogs at The cHealth Blog

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  • guest

    This is too big brother for me. It would make me less open with my doctor, not more. With electronic medical records, I am already more judicious about the information I share because of concerns about where it might end up.

    • guest

      Besides, don’t the patients’ labs and weight tell you what the patient has been up to? I suspect if I’ve gained weight my doctor already knows it’s not due to my eating heaping bowls of lettuce leaves and spending too much time in the gym.

  • southerndoc1

    “You can keep all of your data and behaviors private if you pay a higher insurance premium”
    Lovely shakedown racket.

    • May Wright

      “If you like your privacy, you can KEEP your privacy!”*

      *terms and conditions apply and may change at any time
      *subject to certain fees and penalties
      *your results may vary

  • MabelMabel

    Dr. Kvedar:

    You said, “I don’t mind the NSA reviewing my phone records because I have nothing to hide.”

    I don’t want blanket surveillance for the simple reason that it is against the 4th Amendment of the U.S. Constitution, which prohibits unreasonable searches and seizures and requires any warrant to be judicially sanctioned and supported by probable cause. It seems to me that this holds for private health information.
    Although I agree with you that a person’s healthcare information could be used to encourage said person to adopt healthier habits, good personal and societal goals indeed, personal healthcare information could also be used to harm an individual. Consider how knowing that a politician running for office has had multiple bouts of venereal disease could be used to blackmail the politician; such information could be used to extract favors from the politician that he/she would not have bestowed otherwise. Moreover, some diagnoses carry a stigma, especially mental illnesses, and that information, in the wrong hands, could devastate someone’s life unnecessarily.
    Thank you for tackling this ticklish topic.

  • May Wright

    You know, this whole “If you’ve done nothing wrong, you have nothing to hide!” argument, which infers that anyone who doesn’t support the State violating their Constitutional rights must therefore be a criminal, a terrorist, or worse… is very Kafkaesque.

    And also, this: “Is this level of monitoring too invasive? Remember, society has to pay the cost of your diabetic retinopathy and your chronic renal failure if you don’t care for your diabetes.” You know what the solution to that is? Don’t MAKE “society” responsible for paying each others’ medical expenses. Socialized medicine will inevitably turn any population into a society of nosy-parkers, where everyone is concerned that everyone else might be getting more than their “fair share”, and thus even their most intimate of behaviors and habits are fair game for exposure and public censure.

    None of these proposals to force us to willingly have strangers violate our privacy, “for our own good”, is going to lead anywhere positive.

  • NormRx

    I had a cop ask me if he could search my car after a routine traffic stop. I replied “you can, if you get a warrant.” He then told me “if I didn’t have anything to hide I shouldn’t care.” I replied “I will make a deal with you, you can search my car if I can search your house, and you really shouldn’t mind if you don’t have anything to hide.” He got a little pissed, but he did not take me up on my offer. I have various items my car, each of those items are legal in some states and each are illegal in some states. There are thousands of laws on the books and they vary from state to state, it is virtually impossible to be in compliance with all of them.
    I do not trust the government, just ask Martha Stewart and Scooter Libby.

    • EE Smith

      “There are thousands of laws on the books and they vary from state to state, it is virtually impossible to be in compliance with all of them.”

      Law professor Glenn Reynolds brings that up often, with the catch-phrase “ham sandwich nation”. He has a paper on it in the Columbia Law Review.

      http://www.columbialawreview.org/ham-sandwich-nation_reynolds/

      See also Gene Healy’s “Go Directly to Jail: The Criminalization of Almost Everything” and Harvey Silverglate’s “Three Felonies a Day”.

  • EE Smith

    In “Wired” Magazine:

    Why ‘I Have Nothing to Hide’ Is the Wrong Way to Think About Surveillance.

    Including this: “We won’t always know when we have something to hide. . . . If the federal government can’t even count how many laws there are, what chance does an individual have of being certain that they are not acting in violation of one of them? . . . If the federal government had access to every email you’ve ever written and every phone call you’ve ever made, it’s almost certain that they could find something you’ve done which violates a provision in the 27,000 pages of federal statues or 10,000 administrative regulations.
    You probably do have something to hide, you just don’t know it yet.

    http://www.wired.com/opinion/2013/06/why-i-have-nothing-to-hide-is-the-wrong-way-to-think-about-surveillance/

  • Thomas D Guastavino

    If the ACA has any chance at all of working as promised, (More coverage at a lower cost) then reimbursements to providers have to be cut. That cut will be provided through accountable care. The only way accountable care will work is through data mining. That requires access to private medical records. Providers were first bribed, eventually will be threatened, to provide the technolgy necessary through EMR. Diabolical.

    • whoknows

      Hi Dr. G . We chatted awhile back. I am intrigued but not following your line of thought. I have heard about data mining. I also wonder how data mining was achieved politically in electronic health records. But how were doctors bribed or threatened?

      • Thomas D Guastavino

        Its called “meaningfull use” . It means that if health providers implement EMR in a “meaningfull way” they will be paid a bonus. After 2015 if a provider has not implemented EMR then they will get a cut in reimbursement.

        • whoknows

          this is really creepy. I had heard of that but never put it together. Can’t figure out how they can make Medicare payments to MD’s less than they already have.
          But the purpose of this utter madness?
          I am guessing that government is not just being bureaucratic here. And that this is driving private doctors out of practice.
          And all of this data is to feed Healthcare industry? How is this legal?
          Reminds me of a Ray Bradbury novel. Or better yet the book 1984.

  • maggiebea

    OMG really? Did you actually propose to let rich people pay for privacy but have the health records of poor people snooped?

    As to ‘if you’re not doing anything criminal, why do you mind the snooping?’ I’m sure your 15-year-old daughter isn’t doing anything criminal in the bathroom, so why would you mind ‘the government’ taking her picture in the shower? Isn’t it obvious that ‘the government’ consists of a lot of government employees, who are human, after all, with biases and sometimes-prurient interest and their fair share of nosiness.

    And what about all the non-criminal things one does that one’s neighbors … or a government official in a far-away community … might disapprove of? Say, belonging to an out-of-favor religion, or reading pornographic books, or having intimate relationships with people the far-away person thinks you shouldn’t know?

    That’s why I don’t want so much surveillance.

    • dontdoitagain

      As an example we can look to the TSA. Nothing wrong here, right?

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