I spent most of this week at Health Datapalooza, the big annual event that brings the health IT industry and the health IT feds together here in Washington DC. It was as wonky and startupy as ever, and I’m ever-grateful to Academy Health for letting me be a part of it.
As is usual, I was going on about informed consent and ethics and the idea that we don’t have to toss those two things over the side to get innovation out of health IT, especially health IT that moves closer and closer to the citizen. But I felt alone a lot. Many folks didn’t even want to use the word citizen, preferring “consumer” or “user” instead. There was a sense among quite a few people I spoke with that privacy was a problem to be gotten rid of, sand in the gears of the soon-to-be-realized brave new health world.
And that bugs me a lot.
We gave away our shot at an ethical consumer technology world a while ago. We don’t have to give this one away.
The failure is evident every time I see a story about an amazing technology. Design a robot that can unfold inside a kid’s stomach to get swallowed batteries out? DONE. Design software that respects privacy? WHOA SLOW DOWN THERE BUDDY.
This failure of imagination is the most significant threat to health privacy - the idea that because we threw it away in the software stacks that we have to throw it away in the health stacks.
It’s a failure that comes from entrepreneurs, who don’t see the opportunity in treating people like citizens with rights instead of potential customers to be targeted. It’s also a failure that comes from investors who can’t imagine a business model other than “data is oil” - with no thought to the network effects of treating human beings literally as oil wells (without even the grace to share mineral rights - my Texan family would never stand for that).
Imagine bigger, folks. Try integrating ethics into your design. Try thinking of participant-centric as meaning “inviolable rights” rather than “targeting for purchase.” You might be surprised to find that ethical designs work really well, and that you don’t have to treat a human being like an oil well to innovate in health IT.