Today, here’s guest post from Cathy O’Neil at the blog “Mathbabe” with many of the same references you have heard from me of late relative to medical data. You can also view video #3 in the footer of my blog to listen to a lecture
she gave a while back. It’s there along with 3 other videos I consider important and material that reflects what’s happening in “the real world” as we get caught up on a lot of rhetoric on the web that is maybe how we would “like” the world to be but again we have both virtual and real world values competing with each other today, as I call it “The Grays” in another post. Inequality is the focus now and we can put our guns down with “transparency” and all that rhetoric as it’s happening anyway so less of that irrelative buzzword is also welcome today.
Her background is “not” healthcare but rather she works as a Quant and her work and efforts support much of the Occupy movement, and she spent time working at a Hedge Fund years back and found out it was not what she felt where she wanted to be; however, what she learned there as far as behaviors, how modeling is done in finance, etc. is pretty valuable as we get an inside look at how that works or did work on Wall Street. Right to the point, she’s pretty much addressing “it’s not working” when it comes to privacy and how data ends up being used against people. We are not getting smarter in that respect and the lack of ethics is becoming more profound all the time with the chase for more data.
Again having someone outside of the healthcare business who works with models and coding share her viewpoint is healthy too as we get observances outside of what is spoken in the industry.
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 Wal-Mart 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.
Now on a secondary note here it was interesting yesterday after this post, that Acxiom decided to reach out on Twitter with me yesterday and below you can see a copy and paste of how it went. I don’t if it will have any impact at all but my case in point made is that their data is flawed along with other data out there floating around about me, and people are confused and don’t know how to work with “flawed data” and use it to pass judgment on others, and thus so what Cathy said above “it is making it harder for poor people to eke out a living”. I keep saying as well we have a very weak government that can’t or won’t tune in to this as well and thus so the rate of inequality is accelerating every day, while many are under the auspice that they are making fair decisions when in fact that is not so.
Oh Crap, Now Hospitals Are Now Buying Data From Acxiom - Data Selling Epidemic Continues to Evade on Personal Privacy As “Algo Duped-Stat Rat” People Try to Implement Virtual Models That Won’t Work…
Here’s the tweets so I gave it my best shot…with trying to express what happens in “the real world” with data and perhaps even Acxiom themselves and others who sell data or not even aware of the entire picture their data is creating.
Acxiom @MedicalQuack We believe in ethical use of data & giving consumers transparency/choice – learn more about our stance: bit.ly/PMf0ka
Acxiom @MedicalQuack Hi Barbara, important to note this type of data from Acxiom is used for marketing outreach only & NOT for medical purposes
MedicalQuack @Acxiom I understand it's not medical, I'm a former EMR developer myself and former query monster as I called myself
MedicalQuack @Acxiom I took the same stance as most others on the web, not enough to just look up data on file for self bit.ly/11X2LAN
MedicalQuack @Acxiom I understand it's the hospital with their determination that there's value but too many flaws and people won't get that
MedicalQuack @Acxiom This video says it better than anything "Context is Everything"-there's the danger bit.ly/wEAK4R
MedicalQuack @Acxiom The data files on myself with your company and others is flawed, but people take that as the gospel for decision making
MedicalQuack @Acxiom It's problem everywhere-Google even told me my "real name" was machine compliant-algorithm suspended me bit.ly/TJT73y
MedicalQuack @Acxiom When my data is bought and sold and requeried so many times I have no clue to the orgins of the errors and can't fix it
MedicalQuack @Acxiom You're not the only data seller out there, banks, companies you name it and data bases get requeried and sold a lot
MedicalQuack @Acxiom When a consumer is "scored" based on data analytics-there's a new piece of data to sell about that consumer bit.ly/SWbIMq
MedicalQuack @Acxiom With doctors, look at the flawed data that is on the web about them, Healthgrades/Vitals-same thing bit.ly/1kaY2nb
As always, take visit over to the Killer Algorithm page and you can catch a couple more videos from Cathy along with other videos which I consider important, as I’m just the curator putting together what I consider “meaningful” material to help folks catch up on what’s really going on today with modeling and intelligence that can fool you. Sure we like transparency of data too, but don’t let that side track you from the real issue of inequality. We see it in the press all the time about transparency and we have moved beyond that focus and inequality has taken it’s place. BD
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