Five days ago I gave blood. It was my second time, and I'm so incredibly thankful for the opportunity. Others who have given blood, they have been helpers, and they are the people who saved my dad's life. I am also incredibly thankful for them. And I just want to reach out to you, and let you know that you can help too.
"It really doesn't take very many of us to achieve spectacular results."
I wore red, to represent the precious blood I gave.
And here I am in my car after donating.
Proudly wearing my "I make a difference" sticker.
And now for a video that I found on TED which has inspired me to give my blood for more reasons than I had five days ago. Watch the video below to find out why.
9:20-- So the thing that I'm proposing we do here is that we reach
behind us and we grab the dust, that we reach into our bodies and we grab the
genotype, and we reach into the medical system and we grab our records, and we
use it to build something together, which is a commons. And there's been a lot
of talk about commonses, right, here, there, everywhere, right. A commons is
nothing more than a public good that we build out of private goods. We do it
voluntarily, and we do it through standardized legal tools. We do it through
standardized technologies. Right. That's all a commons is. It's something that
we build together because we think it's important.
And a commons of data is something that's really unique,
because we make it from our own data. And although a lot of people like privacy
as their methodology of control around data, and obsess around privacy, at
least some of us really like to share as a form of control, and what's
remarkable about digital commonses is you don't need a big percentage if your
sample size is big enough to generate something massive and beautiful. So not
that many programmers write free software, but we have the Apache web server.
Not that many people who read Wikipedia edit, but it works. So as long as some
people like to share as their form of control, we can build a commons, as long as
we can get the information out. And in biology, the numbers are even better. So
Vanderbilt ran a study asking people, we'd like to take your biosamples, your
blood, and share them in a biobank, and only five percent of the people opted
out. I'm from Tennessee. It's not the most science-positive state in the United
States of America. (Laughter) But only five percent of the people wanted out.
So people like to share, if you give them the opportunity and the choice.
And so all of these things are part of the clinical study
that we've created, so you can actually come in, all you have to be is 14 years
old, willing to sign a contract that says I'm not going to be a jerk,basically,
and you're in. You can start analyzing the data. You do have to solve a CAPTCHA
as well. (Laughter) And if you'd like to build corporate structures on top of
it, that's okay too. That's all in the consent, so if you don't like those
terms, you don't come in. It's very much the design principles of a commons
that we're trying to bring to health data. And the other thing about these
systems is that it only takes a small number of really unreasonable people
working together to create them. It didn't take that many people to make
Wikipedia Wikipedia, or to keep it Wikipedia. And we're not supposed to be
unreasonable in health,and so I hate this word "patient." I don't
like being patient when systems are broken, and health care is broken. I'm not
talking about the politics of health care, I'm talking about the way we
scientifically approach health care. So I don't want to be patient. And the
task I'm giving to you is to not be patient. So I'd like you to actually try,
when you go home, to get your data. You'll be shocked and offended and, I would
bet, outraged, at how hard it is to get it. But it's a challenge that I hope
you'll take, and maybe you'll share it. Maybe you won't. If you don't have
anyone in your family who's sick, maybe you wouldn't be unreasonable. But if
you do, or if you've been sick, then maybe you would. And we're going to be
able to do an experiment in the next several months that lets us know exactly
how many unreasonable people are out there. So this is the Athena Breast Health
Network. It's a study of 150,000 women in California, and they're going to
return all the data to the participants of the studyin a computable form, with
one-clickability to load it into the study that I've put together. So we'll
know exactly how many people are willing to be unreasonable.
So what I'd end [with] is, the most beautiful thing I've learned
since I quit my job almost a year ago to do this, is that it really doesn't
take very many of us to achieve spectacular results. You just have to be
willing to be unreasonable, and the risk we're running is not the risk those 14
men who got yellow fever ran. Right? It's to be naked, digitally, in public. So
you know more about me and my health than I know about you. It's asymmetric
now. And being naked and alone can be terrifying. But to be naked in a group,
voluntarily, can be quite beautiful. And so it doesn't take all of us. It just
takes all of some of us. Thank you.
I urge you to try to make a difference.
.
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