Monday, August 27, 2018

How Deep the Data Mine

My health care provider is a little bit terrifying.

I live in Northwestern PA, which means my health care all occurs under the shadow of one of the most giant "on-profits" on the planet. Pittsburgh's main industry might once have been steel; now it's health care.

The behemoth is digitized to the max. I can get on line and order prescription refills, set up a doctor's appointment, and do all that annoying paperwork that you usually do on a clipboard balanced on your knee while sitting in the waiting room. But to do all that, you need an account. So I went on line to set one up and now I feel... queasy.

Since the account is tied to my health care records and my various drug prescriptions, I needed to answer some security questions on the way in, and they were... well. Creepy.

What city is [my daughter's name] associated with? How much land does my house sit on? And something about my wife.

Mind you, these were multiple choice questions, and not questions I had previously provided the answers to. The system already knew where my daughter lives and how big my property is. This is a system that has already collected all my medical information; it knows that I had my appendix out fifty years ago, and it knows that I was once on valium (but not why-- I had hiccups for three days straight, which is not nearly as funny as it sounds).

It's a deep thorough data mine, and I will confess that I have mixed feelings about it. I'd just as soon that, should a medical emergency occur, my health care provider knows something about my history. I appreciate the convenience of not having to call the doctor's office for little things like prescription refills.

But there is so much data there.

Honestly, part of how I deal with the reality of data mining is age-- I'm old enough that it's already too late to collect data on my third grade achievement tests and the time I got paddled in sixth grade and the time I split open my knee. I can almost-- almost-- make my peace with giant data mine because I've mostly-- mostly-- escaped.

But my twins are not even two years old yet, and I worry about the giant assortment of data-gathering machinery arrayed against them, the many fights going on to hold it back. I worry about a huge unelected system that is unaccountable to anyone and yet is far from dependable (click here to read the story of how my ex-wife's mail gets delivered to me). I worry about who will have access, who will be sold access, and what sort of decisions will be made about my children and grandchildren's lives based on that giant pile of sort-of-accurate, previously-considered-nobody's-business data.

We mostly live with this without thinking about it, and then every once in a while something comes along to remind you just how much your digital record knows about you.

My health care provider, just like my twins' future schools, has the opportunity to collect deep and deeply personal data. There are so many dangers that go with that, from misuse of the data to theft of the data to use of the data against my own best interests. And my health care provider is a super-rich behemoth, which is in a way comforting because what would happen if my data was held by a poor-struggling institution looking for any kind of revenue-generating scheme to survive?

I don't think there's a more critical issue in our world about which there has been less discussion-- which is just how our Data Overlords like it. The mines have been dug really deep, and we continue to dance around on the surface, happily oblivious to just how much ground has been dug out from under us.

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