We are not ready for health data mining
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.