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.