Protecting us from the terrors of unhealthy lifestyles

If a mosquito lands on someone’s head and you hit the mosquito with a shovel, is the death of the guy under the mosquito considered an unintended consequence?

So now we know that the government of the United States of America is spying on its own citizens, not specifically on any one in particular, but massively and indiscriminately collecting troves of data on all American people. All perfectly legal, complete with secret courts that must approve each wholesale transaction with government data providers, which they do 4 times every day and twice on Sunday (or something like that). It’s not clear if the government pays for volume or value, or if the data providers are just donating this electronic bounty to the government as an expression of their patriotic duty, and perhaps in lieu of taxes which most of these technology giants (e.g. Microsoft, Apple, Google, Yahoo, Verizon, etc.) are successfully, and also legally, evading.

So those who are being spied upon are actually paying the bills for all spying activities, including fees for services to data providers and taxes to support government processing of such unprecedented amounts of data, but in all fairness we must note that our progressive and open government is trying to save us some money by utilizing the latest open-source technologies for its cutting edge Boundless Informant software (yep, it’s in Wikipedia already). The agency engaged in the electronic surveillance of your Facebook likes and dislikes, the National Security Agency (NSA), is a military agency headed by a uniformed soldier, and its job amongst other things is to supply information to “war planners and war fighters.” The war being planned and fought here is presumably the never ending war on terror (with zombies just around the corner), and it seems that the preferred strategy is to replace the possibility of terrorist (or zombie) induced terror, with the benevolent terror of being watched and tracked by your friendly military, for your own good and the good of the nation.

Another branch of our great government is also very much concerned with our well-being and is also waging all sorts of little wars to protect us from the terrors of unhealthy lifestyles, such as being sick or preferring to be left alone, and as is the case with the war on terror, the wars on lifestyles require lots of electronic information. Sadly, the information needed by the Department of Health and Human Services (HHS) to successfully prosecute its wars, and keep us safe, is not readily available in electronic format, and although the current NSA data providers did try to collect health data in the past, and some are still trying today, most medical information is either on paper or scattered all over the place in electronic formats unsuitable for processing in the zettabyte data centers of the military. Fortunately, the gentle and caring government who is watching over all of us came up with a great solution.

The government decided to finance the purchasing of computers for medical records holders who agree to collect health data in a format more conducive to large scale processing. To make sure that medical data is useful, the distinguished President’s Council of Advisors on Science and Technology (PCAST) advised that medical records should be broken down into specific elements with proper metadata attached to each one, to better resemble the electronic data available from Google, Microsoft and other Internet data providers. But even with all these improvements, the collection of medical data is proving extremely difficult.

First, there are hundreds of thousands of medical records holders, which is a huge logistic problem. Imagine the nightmare of collecting data from hundreds of thousands of mom and pop phone companies or search engines or social media outlets, each with a few thousand users, and each with a slightly different data format. This problem seems to be resolving itself though, as medical records holders are consolidating into larger and larger health chains and as a handful of medical software vendors are gaining huge market shares within these chains.

Second, health data was not traditionally generated by the public and having only a few intermediaries empowered to generate electronic data creates a serious bottleneck in collectible content generation. This too is being slowly resolved as people are increasingly encouraged to attach themselves to various tracking devices and as the movement to allow patients to create data in their medical records is gaining momentum. One cannot understate the importance of increasing the velocity of health data to customary Internet levels and beyond. Think about the value of correlating metadata from Verizon phone calls with real time changes in blood pressure, heart rate and perhaps even perspiration, or think about the improvements to the “51 percent confidence in a target’s ‘foreignness’” that could be achieved by simply knowing what targets eat every day. Oh, and let’s not forget that Section 215 of the Patriot Act authorizes the collection of medical records amongst other things.

The third set of problems facing the war on not being safe, are that potential health data providers are accustomed to antiquated oaths and legislation concepts that supposedly prohibit them from becoming government data suppliers, and consumers who have no problem with other electronic data collection, seem a bit skittish when it comes to their medical information. So the government is mounting an all-out effort to liberate medical data from the privacy ball-and-chains imposed by Hippocratic oaths and HIPAA laws.

Every government approved medical data collection software must allow consumers to dislodge their information from health care providers’ data stores and send it to roam free and uninhibited on the Internet, preferably over “secure” email, which has been shown to improve consumers’ physical, mental and financial health and well-being. To spur consumers into action, the government is conducting a beautiful marketing campaign aimed at fostering “trusted exchange” of clinical information. Our government’s trustworthiness should be evident from our Director of National Intelligence, James Clapper, whose “too cute by half” responses to Congress are “the most truthful, or least untruthful,” by his own admission. There surely is no other government in this whole wide world with spy managers so chummy, candid and forthcoming. Like a breath of fresh air.

So when the government tells us that we can opt-in or opt-out or opt halfway in and halfway out of trusted exchange of our medical records, we should trust that it is indeed so. Vaguely being aware that information stored in a computer database, connected to the Internet, can be copied, backed up or extracted in many ways, regardless of frontend opting preferences, should not in any way give you pause or elicit suspicions that your information may be shipped over to the government zettabyte collection.

Besides, as Mr. Clapper eloquently stated, this is really a trifle matter of semantics: “When someone says ‘collection’ to me, that has a specific meaning, which may have a different meaning to him.” The soldier in charge of the NSA, General Keith Alexander, tried to clarify in a Senate Appropriations Committee hearing, that there is a subtle difference between amassing data and actually looking at it. President Clinton, for example, had similar nuanced definitions for smoking pot and having sex.

Speaking of the wisdom of great American leaders, President Obama is reminding us that “We’re going to have to make some choices as a society,” because, “You can’t have 100 percent security and also then have 100 percent privacy and zero inconvenience,” and you definitely can’t have 100 percent health without making some hard choices. One cannot fault our president for forgetting, seeing how busy he is running our Nnation, but we made our choices in 2008 and again in 2012, when we chose a president who said that the previous administration “puts forward a false choice between the liberties we cherish and the security we provide.”

As a society, we don’t want to communicate by ravens instead of email and cell phones, we don’t want to throw our Birkenstocks at computer screens, we don’t want a black market for doctors who are not on the grid, and we are rather tired of having to make false choice after false choice. Perhaps it’s time for our president to make some personal choices as well.

Margalit Gur-Arie is founder, BizMed. She blogs at On Healthcare Technology.

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  • Mike C.

    To be honest did read all the way through, was too long and lost me between NSA and HHS.

    • Margalit Gur-Arie

      :-) You are right, of course…
      Main point is that a sold-out administration that spies & lies to the public is computerizing medical information mostly in order to better spy & lie…. and I am a very disgruntled liberal.

      • adh1729

        Our government sold out around the time of the Civil War. Abe Lincoln was one of our last decent presidents. Most nowadays are rather Acting Presidents, who pretend to serve the American people but truly serve something or someone else.
        Funny how you describe a “never-ending war on terror.” I suggest that you read “Perpetual War for Perpetual Peace”, by Harry Elmer Barnes, 1953; and/or a parallel book “Freedom Betrayed”, written by former president Herbert Hoover, but published about 50 years after his death. These volumes detail just a small piece of the story of how messed up our country has become. There is much more elsewhere if you know where to look.

        • Margalit Gur-Arie

          That may very well be true, although I like Teddy and have a soft spot for Harry Truman, and one may argue that as early as the second President, people’s rights were attacked by the government.

          However, what I find scary right now, is that the sheer size of the country, the one grand defense that the super-thinkers of the founding generation thought would protect the federal structure from undue influence of interest groups (see the Federalist papers in particular), has been rendered inconsequential by technology. And technology, with all the unquestionable good that it brought, it also comes with unintended consequences that we seem unable to mitigate.

  • Guest

    This post is excellent, and makes me extremely glad to know that I’m not alone among health care professionals that pay attention to what’s going on outside of medicine. We’re all in for a rough ride if we don’t start advocating for some change soon (real change, not the hopey change of Obama campaigns). With the way things are heading, black market doctoring will be in many of our futures.

    • Margalit Gur-Arie

      Thank you. I was hoping to make that exact point.

  • drgh

    Margalit, the reason this article feels so convoluted and complicated is that it was designed that way. All these things you describe have been engineered in an organized way to be clandestine and so complicated, that no one understands. If you do understand it is extremely complex to explain and for anyone to understand.

  • drgh

    Well here is something convoluted and I think unethical but that somehow complies with HIPAA? Would love your thoughts Margalit or anyone else on how this is legal.

    Well here goes. I bought a medication that I paid out of pocket for as my insurance did not cover meds. I bought them on the east coast and I live on the west coast. I prescribed it myself.

    A few months later I was applying for insurance and I was asked why I was taking the medication. Since there was no medical insurance used and I prescribed it myself, I WONDERED HOW THEY GOT THIS INFORMATION.
    The transaction was between me and my doctor(which in this case was also me) and my pharmacist. As it turned out, there is a multi billion dollar industry called Milleman that is the investigational arm of the insurance company. Basically if they can find out what you are prescribed, they can find out any pre existing condition that you might be taking the medication for. They are paid billions for this service but few know they exist. They had my whole profile including my SSN. I felt this was an invasion of my privacy.

    Any ideas how this happened and how it is legal?

    • Margalit Gur-Arie

      Pharmacies have been and are selling supposedly de-identified data to all sorts of data mining companies, and the courts, in several cases, found that this is just fine because the data is de-identified. De-identification has various degrees, and I am not certain that all of it is actually de-identified. If you are in the database for some insurer or PBM, they’ll find you with or without your SSN. People that pay cash are supposedly protected (and the ACA has some additional provisions for that), but I find it difficult to understand how they go about removing your transactions from the files they sell legally.

      This article is a bit old, but has a good explanation of the process, which hasn’t changed much

      • drgh

        Thanks Margalit. Sad part is I complained to HHS (human Services) and found it was such an ordeal. In the end they just told me I signed the release to disclose to the insurance confidential information.
        But I never understood how they got it. Anf HHS did not care either. Thanks for your input. What I generally learned with HIPAA is that some of these data mining companies are exempt under HIPAA. It is very complicated and convoluted and I think unethical and HIDDEN from the general public. Until you experience it first hand it is quite unbelievable.

    • meyati

      In my state, pharmacies are required to report to the state, the DEA, the FDA, and medicare/medicaid. Because of contracts with the HMO that has a pharmacy board that reports to various government agencies on what my doctors prescribe me, my PCP has been reported for prescribing Armour-which is a self-pay. If a pharmacy doesn’t report to the state, it can lose it’s license to dispense medications. If it doesn’t report to the HMO pharmacy boards, the boards can demand the state investigate the pharmacy. A doctor doesn’t have any control over what he does. There is a war on Armour thyroid. I take Armour thyroid. My doctor has been called on the carpet because-as he puts it-refills Armour thyroid. My body can’t break T4 down that’s in synthetic thyroid supplements. So it’s a war on terror, it’s a war against drugs that might hurt us, it’s a war on me. Mouth radiation changed my thyroid-I’m out of range-I went to an ED where protocol for cancer patients wasn’t followed and ended up in the main hospital. While being connected to IVs, learning how to use the phone, control the TV, shown where the bath room is-I had an argument about Armour thyroid, and I asked them “Why do you want to make me sicker?” Apparently they’ve jumped on my doctor again. He’s trying to do everything to put off a thyroid screen, changing the dose for Armour, told me in the electronic exchange that Armour is unreliable-and why did I have to use the word ‘prescribe’ instead of refill? I’m not doing well, I even cried the other day during a rerun of “The Fifth Element” with Bruce Willis. When I did try try synthetic thyroids-I’m a type A-adrenaline junkie- I kicked and punched holes in the walls. My family and I just don’t need that-and I’m so scared about what will happen on my next visit-Will I be denied Armour? My blood pressure is up just thinking about this. For the many people that feel synthetic thyroids are superior-This is supposed to be America- I pay my own freight- Why can’t you leave me and my doctor alone-isn’t cancer bad enough without you insisting that I take something that really messes me up and might cause me to harm somebody else? I no longer have a husband that can drag me into an ER-and threaten the staff into action.

      • drll

        I am sorry to hear what you are going through. That decision should be between you and your Doctor. not you hmo.

  • usvietnamvet

    I don’t own a cell phone because I have no wish to be that accessible. But I also like the fact that big brother can’t track me. The big problem is the government believes we are too stupid and too lazy to fight back about this illegal spying. I personally think that Edward Snowden is a hero and should face no prosecution. he’s no threat to our security. He’s only a threat to a government that believes they can do anything they want and it doesn’t matter if its Republicans or Democrats. Both are corrupt and essentially the same. The sad fact is that we’ve gotten the government we deserve because so few of us bother researching and actually voting for good people. HIPAA is like any other government written program…it’s full of crap and doesn’t protect us one bit. It simply puts $$$ in the pockets of others.

    • Margalit Gur-Arie

      Agreed 100%, and thank you for posting this spot on comment….

  • Joseph Russo

    beautifully written. Since the trajectory is not good and akin to a bell being rung, I suspect it is too late. The question will be the extent to which we can, in measures of small rebellion (civil disobedience), thwart the improper use of the information being collected. On the other hand – with the advent of DSM-5, who among us is diagnosable? The system will collapse under the weight of so much data.

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