Home > modeling > We are not ready for health data mining

We are not ready for health data mining

June 27, 2014

There have been two articles very recently about how great health data mining could be if we could only link up all the data sets. Larry Page from Google thinks so, which doesn’t surprise anyone, and separately we are seeing that the consequence of the new medical payment system through the ACA is giving medical systems incentives to keep tabs on you through data providers and find out if you’re smoking or if you need to fill up on asthma medication.

And although many would consider this creepy stalking, that’s not actually my problem with it. I think Larry Page is right – we might be able to save lots of lives if we could mine this data which is currently siloed through various privacy laws. On the other hand, there are reasons those privacy laws exist. Let’s think about that for a second.

Now that we have the ACA, insurers are not allowed to deny Americans medical insurance coverage because of a pre-existing condition, nor are they allowed to charge more, as of 2014. That’s good news on the health insurance front. But what about other aspects of our lives?

For example, it does not generalize to employers. In other words, a large employer like Walmart might take into account your current health and your current behaviors and possibly even your DNA to predict future behaviors, and they might decide not to give jobs to anyone at risk of diabetes, say. Even if medical insurance casts were taken out of the picture, which they haven’t been, they’d have incentives not to hire unhealthy people.

Mind you, there are laws that prevent employers from looking into HIPAA-protected health data, but not Acxiom data, which is entirely unregulated. And if we “opened up all the data” then the laws would be entirely moot. It would be a world where, to get a job, the employer got to see everything about you, including your future health profile. To some extent this is already happening.

Perhaps not everyone thinks of this as bad. After all, many people think smokers should pay more for insurance, why not also work harder to get a job? However, lots of the information gleaned from this data – even behaviors – have much more to do with poverty levels than circumstance than with conscious choice. In other words, it’s another stratification of society along the lucky/unlucky birth lottery spectrum. And if we aren’t careful, we will make it even harder for poor people to eke out a living.

I’m all for saving lives but let’s wait for the laws to catch up with the good intentions. Although to be honest, it’s not even clear how the law should be written, since it’s not clear what “medical” data is nowadays nor how we could gather evidence that a private employer is using it against someone improperly.

Categories: modeling
  1. June 27, 2014 at 7:51 am

    Reblogged this on analyticalsolution and commented:
    Mind you, there are laws that prevent employers from looking into HIPAA-protected health data, but not Acxiom data, which is entirely unregulated. And if we “opened up all the data” then the laws would be entirely moot. It would be a world where, to get a job, the employer got to see everything about you, including your future health profile. To some extent this is already happening.

  2. June 27, 2014 at 8:01 am

    As one who worked as a school administrator for 29 years I have mixed feelings about data collection. Data on students, like data on patients, has been collected badly and disjointedly for decades. The advent of computer technology makes it possible to streamline the collection, make it more functional, and arguably make it less biased. (You should see some of the anecdotal information written in student’s confidential files!). We need to get guidelines in place that help with the functionality of the data we are collecting while limiting the circulation of the data to those who intend to use it to assist the student or patient.

  3. June 27, 2014 at 10:05 am

    The question, as always — Cui Bono? — to whose health?

  4. June 27, 2014 at 10:07 am

    Thank you Cathy and I did a repost over at the Quack too as it’s healthy for folks to hear from someone besides me, and especially someone outside the healthcare industry, maybe as a wake up call here.

    At the bottom I included my Tweets to Acxiom as well, why not gave it my best shot on Twitter since they reached out for all to see, their data is flawed and this further hurts people as those using it for decision making are using erroneous data and that’s the second part of the problem as people put too much faith in what is being collected about us.

    http://ducknetweb.blogspot.com/2014/06/we-are-not-ready-for-healthcare-data.html

    • June 30, 2014 at 5:57 pm

      Almost everything Axciom had on me was wrong. I certainly don’t want them to mess up my medical data as well.

      • June 30, 2014 at 6:26 pm

        But the problem is you don’t really know what they have on you, because they only show you a slice.

        On Mon, Jun 30, 2014 at 5:57 PM, mathbabe wrote:

        >

        • June 30, 2014 at 6:37 pm

          You are absolutely right, but would you think that the rest is correct when everything they’ve shown is all wrong? What are the odds of that?

        • June 30, 2014 at 6:38 pm

          No I’m not saying it’s correct, just that it’s creepy. It is probably even more creepy for being wrong.

          On Mon, Jun 30, 2014 at 6:37 PM, mathbabe wrote:

          >

  5. GPE
    June 27, 2014 at 12:52 pm

    Waiting for the laws to catch up with an today’s evolving, even metastatic, data environment – that’s a long wait for a train not likely to arrive.

    “Information wants to be free,” goes the slogan. Perhaps a corollary is that data doesn’t want to be controlled, just collected. Like the postulated dark matter in the universe, the dark matter of data exists in unknowable and uncontrollable quantities. Primed by Kaufmann’s “adjacent possible,” all this data cruft is waiting to be discovered an analyzed in ways the laws can neither anticipate nor mitigate.

  6. Auros
    June 27, 2014 at 5:12 pm

    I remember having a conversation about excatly this issue with a fellow intern, who was working on a health data project, at the IBM TJ Watson Research Center in Yorktown Heights. In 1998. (I was with the natural language group, myself — the folks who eventually went on to build the Jeopardy program, Watson.)

    Legislators have had decades to think about this stuff, and we’re still not ready. :-|

  7. June 28, 2014 at 10:23 pm

    The “lucky/unlucky birth” is not really a lottery. Parents have ample prior information before conception that should help them assess quite accurately where the child is going to be positioned in the spectrum. Larry Page is not responsible for this, individual parents are. See advice #1 in your preceding post.

  8. noneya
    July 11, 2014 at 2:02 pm

    “I’m all for saving lives but let’s wait for the laws to catch up with the good intentions.”

    Sounds harsh – that sentence sounds very much against saving lives, despite the first few words; and entirely unrealistic – when have the laws *ever* been able to catch up to technology.

  1. June 27, 2014 at 8:09 am
  2. June 29, 2014 at 2:52 pm
Comments are closed.
Follow

Get every new post delivered to your Inbox.

Join 1,413 other followers

%d bloggers like this: