WEBVTT 00:00:00.098 --> 00:00:03.159 So I have bad news, I have good news, 00:00:03.159 --> 00:00:05.024 and I have a task. 00:00:05.024 --> 00:00:07.967 So the bad news is that we all get sick. 00:00:07.967 --> 00:00:10.239 I get sick. You get sick. 00:00:10.239 --> 00:00:12.781 And every one of us gets sick, and the question really is, 00:00:12.781 --> 00:00:15.658 how sick do we get? Is it something that kills us? 00:00:15.658 --> 00:00:17.003 Is it something that we survive? 00:00:17.003 --> 00:00:18.931 Is it something that we can treat? NOTE Paragraph 00:00:18.931 --> 00:00:22.187 And we've gotten sick as long as we've been people. 00:00:22.187 --> 00:00:25.673 And so we've always looked for reasons to explain why we get sick. 00:00:25.673 --> 00:00:27.630 And for a long time, it was the gods, right? 00:00:27.630 --> 00:00:30.784 The gods are angry with me, or the gods are testing me, 00:00:30.784 --> 00:00:33.200 right? Or God, singular, more recently, 00:00:33.200 --> 00:00:35.864 is punishing me or judging me. 00:00:35.864 --> 00:00:38.544 And as long as we've looked for explanations, 00:00:38.544 --> 00:00:42.255 we've wound up with something that gets closer and closer to science, 00:00:42.255 --> 00:00:44.744 which is hypotheses as to why we get sick, 00:00:44.744 --> 00:00:49.484 and as long as we've had hypotheses about why we get sick, we've tried to treat it as well. NOTE Paragraph 00:00:49.484 --> 00:00:53.517 So this is Avicenna. He wrote a book over a thousand years ago called "The Canon of Medicine," 00:00:53.517 --> 00:00:55.923 and the rules he laid out for testing medicines 00:00:55.923 --> 00:00:57.712 are actually really similar to the rules we have today, 00:00:57.712 --> 00:01:00.657 that the disease and the medicine must be the same strength, 00:01:00.657 --> 00:01:03.054 the medicine needs to be pure, and in the end we need 00:01:03.054 --> 00:01:06.195 to test it in people. And so if you put together these themes 00:01:06.195 --> 00:01:10.660 of a narrative or a hypothesis in human testing, 00:01:10.660 --> 00:01:13.316 right, you get some beautiful results, 00:01:13.316 --> 00:01:14.758 even when we didn't have very good technologies. NOTE Paragraph 00:01:14.758 --> 00:01:17.820 This is a guy named Carlos Finlay. He had a hypothesis 00:01:17.820 --> 00:01:20.725 that was way outside the box for his time, in the late 1800s. 00:01:20.725 --> 00:01:23.573 He thought yellow fever was not transmitted by dirty clothing. 00:01:23.573 --> 00:01:25.999 He thought it was transmitted by mosquitoes. 00:01:25.999 --> 00:01:28.361 And they laughed at him. For 20 years, they called this guy 00:01:28.361 --> 00:01:31.850 "the mosquito man." But he ran an experiment in people, 00:01:31.850 --> 00:01:34.953 right? He had this hypothesis, and he tested it in people. 00:01:34.953 --> 00:01:39.595 So he got volunteers to go move to Cuba and live in tents 00:01:39.595 --> 00:01:42.630 and be voluntarily infected with yellow fever. 00:01:42.630 --> 00:01:45.652 So some of the people in some of the tents had dirty clothes 00:01:45.652 --> 00:01:46.871 and some of the people were in tents that were full 00:01:46.871 --> 00:01:49.127 of mosquitos that had been exposed to yellow fever. 00:01:49.127 --> 00:01:52.528 And it definitively proved that it wasn't this magic dust 00:01:52.528 --> 00:01:55.950 called fomites in your clothes that caused yellow fever. 00:01:55.950 --> 00:01:59.326 But it wasn't until we tested it in people that we actually knew. 00:01:59.326 --> 00:02:01.285 And this is what those people signed up for. 00:02:01.285 --> 00:02:04.375 This is what it looked like to have yellow fever in Cuba 00:02:04.375 --> 00:02:08.909 at that time. You suffered in a tent, in the heat, alone, 00:02:08.909 --> 00:02:11.605 and you probably died. 00:02:11.605 --> 00:02:14.822 But people volunteered for this. NOTE Paragraph 00:02:14.822 --> 00:02:18.133 And it's not just a cool example of a scientific design 00:02:18.133 --> 00:02:21.046 of experiment in theory. They also did this beautiful thing. 00:02:21.046 --> 00:02:24.965 They signed this document, and it's called an informed consent document. 00:02:24.965 --> 00:02:27.478 And informed consent is an idea that we should be 00:02:27.478 --> 00:02:29.704 very proud of as a society, right? It's something that 00:02:29.704 --> 00:02:32.470 separates us from the Nazis at Nuremberg, 00:02:32.470 --> 00:02:35.345 enforced medical experimentation. It's the idea 00:02:35.345 --> 00:02:39.133 that agreement to join a study without understanding isn't agreement. 00:02:39.133 --> 00:02:43.242 It's something that protects us from harm, from hucksters, 00:02:43.242 --> 00:02:46.095 from people that would try to hoodwink us into a clinical 00:02:46.095 --> 00:02:49.847 study that we don't understand, or that we don't agree to. 00:02:49.847 --> 00:02:54.176 And so you put together the thread of narrative hypothesis, 00:02:54.176 --> 00:02:56.773 experimentation in humans, and informed consent, 00:02:56.773 --> 00:02:59.438 and you get what we call clinical study, and it's how we do 00:02:59.438 --> 00:03:02.453 the vast majority of medical work. It doesn't really matter 00:03:02.453 --> 00:03:04.795 if you're in the north, the south, the east, the west. 00:03:04.795 --> 00:03:08.908 Clinical studies form the basis of how we investigate, 00:03:08.908 --> 00:03:10.767 so if we're going to look at a new drug, right, 00:03:10.767 --> 00:03:13.765 we test it in people, we draw blood, we do experiments, 00:03:13.765 --> 00:03:16.094 and we gain consent for that study, to make sure 00:03:16.094 --> 00:03:18.743 that we're not screwing people over as part of it. NOTE Paragraph 00:03:18.743 --> 00:03:22.407 But the world is changing around the clinical study, 00:03:22.407 --> 00:03:25.773 which has been fairly well established for tens of years 00:03:25.773 --> 00:03:27.673 if not 50 to 100 years. 00:03:27.673 --> 00:03:30.724 So now we're able to gather data about our genomes, 00:03:30.724 --> 00:03:33.584 but, as we saw earlier, our genomes aren't dispositive. 00:03:33.584 --> 00:03:36.350 We're able to gather information about our environment. 00:03:36.350 --> 00:03:38.260 And more importantly, we're able to gather information 00:03:38.260 --> 00:03:41.100 about our choices, because it turns out that what we think of 00:03:41.100 --> 00:03:43.820 as our health is more like the interaction of our bodies, 00:03:43.820 --> 00:03:47.469 our genomes, our choices and our environment. 00:03:47.469 --> 00:03:50.213 And the clinical methods that we've got aren't very good 00:03:50.213 --> 00:03:52.845 at studying that because they are based on the idea 00:03:52.845 --> 00:03:54.759 of person-to-person interaction. You interact 00:03:54.759 --> 00:03:56.854 with your doctor and you get enrolled in the study. 00:03:56.854 --> 00:03:59.469 So this is my grandfather. I actually never met him, 00:03:59.469 --> 00:04:03.264 but he's holding my mom, and his genes are in me, right? 00:04:03.264 --> 00:04:06.155 His choices ran through to me. He was a smoker, 00:04:06.155 --> 00:04:08.739 like most people were. This is my son. 00:04:08.739 --> 00:04:12.181 So my grandfather's genes go all the way through to him, 00:04:12.181 --> 00:04:14.733 and my choices are going to affect his health. 00:04:14.733 --> 00:04:17.427 The technology between these two pictures 00:04:17.427 --> 00:04:21.100 cannot be more different, but the methodology 00:04:21.100 --> 00:04:25.224 for clinical studies has not radically changed over that time period. 00:04:25.224 --> 00:04:27.892 We just have better statistics. 00:04:27.892 --> 00:04:31.344 The way we gain informed consent was formed in large part 00:04:31.344 --> 00:04:33.935 after World War II, around the time that picture was taken. 00:04:33.935 --> 00:04:37.869 That was 70 years ago, and the way we gain informed consent, 00:04:37.869 --> 00:04:40.746 this tool that was created to protect us from harm, 00:04:40.746 --> 00:04:44.412 now creates silos. So the data that we collect 00:04:44.412 --> 00:04:47.138 for prostate cancer or for Alzheimer's trials 00:04:47.138 --> 00:04:49.753 goes into silos where it can only be used 00:04:49.753 --> 00:04:52.977 for prostate cancer or for Alzheimer's research. 00:04:52.977 --> 00:04:55.871 Right? It can't be networked. It can't be integrated. 00:04:55.871 --> 00:04:59.404 It cannot be used by people who aren't credentialed. 00:04:59.404 --> 00:05:02.357 So a physicist can't get access to it without filing paperwork. 00:05:02.357 --> 00:05:05.425 A computer scientist can't get access to it without filing paperwork. 00:05:05.425 --> 00:05:09.568 Computer scientists aren't patient. They don't file paperwork. NOTE Paragraph 00:05:09.568 --> 00:05:13.554 And this is an accident. These are tools that we created 00:05:13.554 --> 00:05:16.821 to protect us from harm, but what they're doing 00:05:16.821 --> 00:05:19.351 is protecting us from innovation now. 00:05:19.351 --> 00:05:22.616 And that wasn't the goal. It wasn't the point. Right? 00:05:22.616 --> 00:05:25.315 It's a side effect, if you will, of a power we created 00:05:25.315 --> 00:05:27.674 to take us for good. 00:05:27.674 --> 00:05:30.818 And so if you think about it, the depressing thing is that 00:05:30.818 --> 00:05:32.951 Facebook would never make a change to something 00:05:32.951 --> 00:05:35.522 as important as an advertising algorithm 00:05:35.522 --> 00:05:39.933 with a sample size as small as a Phase III clinical trial. 00:05:39.933 --> 00:05:43.595 We cannot take the information from past trials 00:05:43.595 --> 00:05:47.749 and put them together to form statistically significant samples. NOTE Paragraph 00:05:47.749 --> 00:05:51.233 And that sucks, right? So 45 percent of men develop 00:05:51.233 --> 00:05:54.330 cancer. Thirty-eight percent of women develop cancer. 00:05:54.330 --> 00:05:56.674 One in four men dies of cancer. 00:05:56.674 --> 00:06:00.230 One in five women dies of cancer, at least in the United States. 00:06:00.230 --> 00:06:02.458 And three out of the four drugs we give you 00:06:02.458 --> 00:06:05.971 if you get cancer fail. And this is personal to me. 00:06:05.971 --> 00:06:07.934 My sister is a cancer survivor. 00:06:07.934 --> 00:06:11.523 My mother-in-law is a cancer survivor. Cancer sucks. 00:06:11.523 --> 00:06:13.713 And when you have it, you don't have a lot of privacy 00:06:13.713 --> 00:06:17.200 in the hospital. You're naked the vast majority of the time. 00:06:17.200 --> 00:06:20.895 People you don't know come in and look at you and poke you and prod you, 00:06:20.895 --> 00:06:24.336 and when I tell cancer survivors that this tool we created 00:06:24.336 --> 00:06:27.434 to protect them is actually preventing their data from being used, 00:06:27.434 --> 00:06:29.484 especially when only three to four percent of people 00:06:29.484 --> 00:06:32.282 who have cancer ever even sign up for a clinical study, 00:06:32.282 --> 00:06:35.840 their reaction is not, "Thank you, God, for protecting my privacy." 00:06:35.840 --> 00:06:38.537 It's outrage 00:06:38.537 --> 00:06:40.662 that we have this information and we can't use it. 00:06:40.662 --> 00:06:43.138 And it's an accident. 00:06:43.138 --> 00:06:46.193 So the cost in blood and treasure of this is enormous. 00:06:46.193 --> 00:06:49.848 Two hundred and twenty-six billion a year is spent on cancer in the United States. 00:06:49.848 --> 00:06:53.067 Fifteen hundred people a day die in the United States. 00:06:53.067 --> 00:06:55.640 And it's getting worse. NOTE Paragraph 00:06:55.640 --> 00:06:58.622 So the good news is that some things have changed, 00:06:58.622 --> 00:07:00.175 and the most important thing that's changed 00:07:00.175 --> 00:07:02.513 is that we can now measure ourselves in ways 00:07:02.513 --> 00:07:05.571 that used to be the dominion of the health system. 00:07:05.571 --> 00:07:07.729 So a lot of people talk about it as digital exhaust. 00:07:07.729 --> 00:07:10.771 I like to think of it as the dust that runs along behind my kid. 00:07:10.771 --> 00:07:13.147 We can reach back and grab that dust, 00:07:13.147 --> 00:07:15.561 and we can learn a lot about health from it, so if our choices 00:07:15.561 --> 00:07:18.241 are part of our health, what we eat is a really important 00:07:18.241 --> 00:07:20.930 aspect of our health. So you can do something very simple 00:07:20.930 --> 00:07:22.887 and basic and take a picture of your food, 00:07:22.887 --> 00:07:25.771 and if enough people do that, we can learn a lot about 00:07:25.771 --> 00:07:27.196 how our food affects our health. 00:07:27.196 --> 00:07:31.712 One interesting thing that came out of this — this is an app for iPhones called The Eatery — 00:07:31.712 --> 00:07:34.202 is that we think our pizza is significantly healthier 00:07:34.202 --> 00:07:37.640 than other people's pizza is. Okay? (Laughter) 00:07:37.640 --> 00:07:41.248 And it seems like a trivial result, but this is the sort of research 00:07:41.248 --> 00:07:43.562 that used to take the health system years 00:07:43.562 --> 00:07:45.855 and hundreds of thousands of dollars to accomplish. 00:07:45.855 --> 00:07:49.579 It was done in five months by a startup company of a couple of people. 00:07:49.579 --> 00:07:52.203 I don't have any financial interest in it. NOTE Paragraph 00:07:52.203 --> 00:07:54.899 But more nontrivially, we can get our genotypes done, 00:07:54.899 --> 00:07:57.717 and although our genotypes aren't dispositive, they give us clues. 00:07:57.717 --> 00:08:00.523 So I could show you mine. It's just A's, T's, C's and G's. 00:08:00.523 --> 00:08:02.755 This is the interpretation of it. As you can see, 00:08:02.755 --> 00:08:05.355 I carry a 32 percent risk of prostate cancer, 00:08:05.355 --> 00:08:09.578 22 percent risk of psoriasis and a 14 percent risk of Alzheimer's disease. 00:08:09.578 --> 00:08:12.185 So that means, if you're a geneticist, you're freaking out, 00:08:12.185 --> 00:08:16.219 going, "Oh my God, you told everyone you carry the ApoE E4 allele. What's wrong with you?" 00:08:16.219 --> 00:08:19.907 Right? When I got these results, I started talking to doctors, 00:08:19.907 --> 00:08:22.316 and they told me not to tell anyone, and my reaction is, 00:08:22.316 --> 00:08:25.604 "Is that going to help anyone cure me when I get the disease?" 00:08:25.604 --> 00:08:28.668 And no one could tell me yes. 00:08:28.668 --> 00:08:31.474 And I live in a web world where, when you share things, 00:08:31.474 --> 00:08:34.184 beautiful stuff happens, not bad stuff. 00:08:34.184 --> 00:08:36.084 So I started putting this in my slide decks, 00:08:36.084 --> 00:08:38.545 and I got even more obnoxious, and I went to my doctor, 00:08:38.545 --> 00:08:40.527 and I said, "I'd like to actually get my bloodwork. 00:08:40.527 --> 00:08:43.317 Please give me back my data." So this is my most recent bloodwork. 00:08:43.317 --> 00:08:45.686 As you can see, I have high cholesterol. 00:08:45.686 --> 00:08:48.437 I have particularly high bad cholesterol, and I have some 00:08:48.437 --> 00:08:51.440 bad liver numbers, but those are because we had a dinner party with a lot of good wine 00:08:51.440 --> 00:08:54.149 the night before we ran the test. (Laughter) 00:08:54.149 --> 00:08:58.562 Right. But look at how non-computable this information is. 00:08:58.562 --> 00:09:01.536 This is like the photograph of my granddad holding my mom 00:09:01.536 --> 00:09:05.135 from a data perspective, and I had to go into the system 00:09:05.135 --> 00:09:07.297 and get it out. NOTE Paragraph 00:09:07.297 --> 00:09:10.579 So the thing that I'm proposing we do here 00:09:10.579 --> 00:09:12.995 is that we reach behind us and we grab the dust, 00:09:12.995 --> 00:09:15.973 that we reach into our bodies and we grab the genotype, 00:09:15.973 --> 00:09:18.674 and we reach into the medical system and we grab our records, 00:09:18.674 --> 00:09:22.114 and we use it to build something together, which is a commons. 00:09:22.114 --> 00:09:25.258 And there's been a lot of talk about commonses, right, 00:09:25.258 --> 00:09:28.206 here, there, everywhere, right. A commons is nothing more 00:09:28.206 --> 00:09:31.134 than a public good that we build out of private goods. 00:09:31.134 --> 00:09:33.903 We do it voluntarily, and we do it through standardized 00:09:33.903 --> 00:09:36.703 legal tools. We do it through standardized technologies. 00:09:36.703 --> 00:09:39.974 Right. That's all a commons is. It's something that we build 00:09:39.974 --> 00:09:42.494 together because we think it's important. NOTE Paragraph 00:09:42.494 --> 00:09:45.126 And a commons of data is something that's really unique, 00:09:45.126 --> 00:09:47.994 because we make it from our own data. And although 00:09:47.994 --> 00:09:50.281 a lot of people like privacy as their methodology of control 00:09:50.281 --> 00:09:52.536 around data, and obsess around privacy, at least 00:09:52.536 --> 00:09:55.584 some of us really like to share as a form of control, 00:09:55.584 --> 00:09:57.937 and what's remarkable about digital commonses 00:09:57.937 --> 00:10:01.469 is you don't need a big percentage if your sample size is big enough 00:10:01.469 --> 00:10:03.980 to generate something massive and beautiful. 00:10:03.980 --> 00:10:06.538 So not that many programmers write free software, 00:10:06.538 --> 00:10:08.873 but we have the Apache web server. 00:10:08.873 --> 00:10:11.570 Not that many people who read Wikipedia edit, 00:10:11.570 --> 00:10:15.579 but it works. So as long as some people like to share 00:10:15.579 --> 00:10:19.323 as their form of control, we can build a commons, as long as we can get the information out. 00:10:19.323 --> 00:10:21.699 And in biology, the numbers are even better. 00:10:21.699 --> 00:10:24.251 So Vanderbilt ran a study asking people, we'd like to take 00:10:24.251 --> 00:10:27.573 your biosamples, your blood, and share them in a biobank, 00:10:27.573 --> 00:10:29.945 and only five percent of the people opted out. 00:10:29.945 --> 00:10:33.037 I'm from Tennessee. It's not the most science-positive state 00:10:33.037 --> 00:10:36.076 in the United States of America. (Laughter) 00:10:36.076 --> 00:10:38.454 But only five percent of the people wanted out. 00:10:38.454 --> 00:10:42.477 So people like to share, if you give them the opportunity and the choice. NOTE Paragraph 00:10:42.477 --> 00:10:46.960 And the reason that I got obsessed with this, besides the obvious family aspects, 00:10:46.960 --> 00:10:50.233 is that I spend a lot of time around mathematicians, 00:10:50.233 --> 00:10:53.147 and mathematicians are drawn to places where there's a lot of data 00:10:53.147 --> 00:10:56.090 because they can use it to tease signals out of noise. 00:10:56.090 --> 00:10:59.058 And those correlations that they can tease out, they're not 00:10:59.058 --> 00:11:02.930 necessarily causal agents, but math, in this day and age, 00:11:02.930 --> 00:11:05.290 is like a giant set of power tools 00:11:05.290 --> 00:11:09.165 that we're leaving on the floor, not plugged in in health, 00:11:09.165 --> 00:11:11.477 while we use hand saws. 00:11:11.477 --> 00:11:15.915 If we have a lot of shared genotypes, and a lot of shared 00:11:15.915 --> 00:11:18.663 outcomes, and a lot of shared lifestyle choices, 00:11:18.663 --> 00:11:21.439 and a lot of shared environmental information, we can start 00:11:21.439 --> 00:11:24.335 to tease out the correlations between subtle variations 00:11:24.335 --> 00:11:29.646 in people, the choices they make and the health that they create as a result of those choices, 00:11:29.646 --> 00:11:32.132 and there's open-source infrastructure to do all of this. 00:11:32.132 --> 00:11:35.226 Sage Bionetworks is a nonprofit that's built a giant math system 00:11:35.226 --> 00:11:39.798 that's waiting for data, but there isn't any. NOTE Paragraph 00:11:39.798 --> 00:11:43.686 So that's what I do. I've actually started what we think is 00:11:43.686 --> 00:11:47.624 the world's first fully digital, fully self-contributed, 00:11:47.624 --> 00:11:52.659 unlimited in scope, global in participation, ethically approved 00:11:52.659 --> 00:11:56.314 clinical research study where you contribute the data. 00:11:56.314 --> 00:11:58.520 So if you reach behind yourself and you grab the dust, 00:11:58.520 --> 00:12:01.146 if you reach into your body and grab your genome, 00:12:01.146 --> 00:12:04.193 if you reach into the medical system and somehow extract your medical record, 00:12:04.193 --> 00:12:07.516 you can actually go through an online informed consent process -- 00:12:07.516 --> 00:12:10.162 because the donation to the commons must be voluntary 00:12:10.162 --> 00:12:12.955 and it must be informed -- and you can actually upload 00:12:12.955 --> 00:12:15.547 your information and have it syndicated to the 00:12:15.547 --> 00:12:18.643 mathematicians who will do this sort of big data research, 00:12:18.643 --> 00:12:21.499 and the goal is to get 100,000 in the first year 00:12:21.499 --> 00:12:23.857 and a million in the first five years so that we have 00:12:23.857 --> 00:12:27.691 a statistically significant cohort that you can use to take 00:12:27.691 --> 00:12:30.113 smaller sample sizes from traditional research 00:12:30.113 --> 00:12:31.712 and map it against, 00:12:31.712 --> 00:12:34.634 so that you can use it to tease out those subtle correlations 00:12:34.634 --> 00:12:37.163 between the variations that make us unique 00:12:37.163 --> 00:12:41.187 and the kinds of health that we need to move forward as a society. NOTE Paragraph 00:12:41.187 --> 00:12:44.211 And I've spent a lot of time around other commons. 00:12:44.211 --> 00:12:46.891 I've been around the early web. I've been around 00:12:46.891 --> 00:12:49.499 the early creative commons world, and there's four things 00:12:49.499 --> 00:12:52.853 that all of these share, which is, they're all really simple. 00:12:52.853 --> 00:12:55.580 And so if you were to go to the website and enroll in this study, 00:12:55.580 --> 00:12:57.835 you're not going to see something complicated. 00:12:57.835 --> 00:13:02.884 But it's not simplistic. These things are weak intentionally, 00:13:02.884 --> 00:13:05.907 right, because you can always add power and control to a system, 00:13:05.907 --> 00:13:09.871 but it's very difficult to remove those things if you put them in at the beginning, 00:13:09.871 --> 00:13:12.416 and so being simple doesn't mean being simplistic, 00:13:12.416 --> 00:13:14.600 and being weak doesn't mean weakness. 00:13:14.600 --> 00:13:16.951 Those are strengths in the system. NOTE Paragraph 00:13:16.951 --> 00:13:19.616 And open doesn't mean that there's no money. 00:13:19.616 --> 00:13:22.636 Closed systems, corporations, make a lot of money 00:13:22.636 --> 00:13:26.175 on the open web, and they're one of the reasons why the open web lives 00:13:26.175 --> 00:13:29.002 is that corporations have a vested interest in the openness 00:13:29.002 --> 00:13:31.336 of the system. 00:13:31.336 --> 00:13:35.130 And so all of these things are part of the clinical study that we've created, 00:13:35.130 --> 00:13:38.559 so you can actually come in, all you have to be is 14 years old, 00:13:38.559 --> 00:13:40.586 willing to sign a contract that says I'm not going to be a jerk, 00:13:40.586 --> 00:13:43.251 basically, and you're in. 00:13:43.251 --> 00:13:44.824 You can start analyzing the data. 00:13:44.824 --> 00:13:48.983 You do have to solve a CAPTCHA as well. (Laughter) 00:13:48.983 --> 00:13:52.564 And if you'd like to build corporate structures on top of it, 00:13:52.564 --> 00:13:55.710 that's okay too. That's all in the consent, 00:13:55.710 --> 00:13:58.274 so if you don't like those terms, you don't come in. 00:13:58.274 --> 00:14:01.366 It's very much the design principles of a commons 00:14:01.366 --> 00:14:03.960 that we're trying to bring to health data. 00:14:03.960 --> 00:14:06.939 And the other thing about these systems is that it only takes 00:14:06.939 --> 00:14:10.118 a small number of really unreasonable people working together 00:14:10.118 --> 00:14:13.300 to create them. It didn't take that many people 00:14:13.300 --> 00:14:16.772 to make Wikipedia Wikipedia, or to keep it Wikipedia. 00:14:16.772 --> 00:14:18.840 And we're not supposed to be unreasonable in health, 00:14:18.840 --> 00:14:21.116 and so I hate this word "patient." 00:14:21.116 --> 00:14:24.283 I don't like being patient when systems are broken, 00:14:24.283 --> 00:14:26.910 and health care is broken. 00:14:26.910 --> 00:14:31.074 I'm not talking about the politics of health care, I'm talking about the way we scientifically approach health care. 00:14:31.074 --> 00:14:34.344 So I don't want to be patient. And the task I'm giving to you 00:14:34.344 --> 00:14:37.390 is to not be patient. So I'd like you to actually try, 00:14:37.390 --> 00:14:40.107 when you go home, to get your data. 00:14:40.107 --> 00:14:42.824 You'll be shocked and offended and, I would bet, outraged, 00:14:42.824 --> 00:14:45.700 at how hard it is to get it. 00:14:45.700 --> 00:14:48.319 But it's a challenge that I hope you'll take, 00:14:48.319 --> 00:14:50.780 and maybe you'll share it. Maybe you won't. 00:14:50.780 --> 00:14:52.224 If you don't have anyone in your family who's sick, 00:14:52.224 --> 00:14:55.217 maybe you wouldn't be unreasonable. But if you do, 00:14:55.217 --> 00:14:57.424 or if you've been sick, then maybe you would. 00:14:57.424 --> 00:15:00.512 And we're going to be able to do an experiment in the next several months 00:15:00.512 --> 00:15:03.669 that lets us know exactly how many unreasonable people are out there. 00:15:03.669 --> 00:15:05.791 So this is the Athena Breast Health Network. It's a study 00:15:05.791 --> 00:15:09.609 of 150,000 women in California, and they're going to 00:15:09.609 --> 00:15:12.327 return all the data to the participants of the study 00:15:12.327 --> 00:15:15.473 in a computable form, with one-clickability to load it into 00:15:15.473 --> 00:15:18.089 the study that I've put together. So we'll know exactly 00:15:18.089 --> 00:15:20.393 how many people are willing to be unreasonable. NOTE Paragraph 00:15:20.393 --> 00:15:22.777 So what I'd end [with] is, 00:15:22.777 --> 00:15:26.097 the most beautiful thing I've learned since I quit my job 00:15:26.097 --> 00:15:29.480 almost a year ago to do this, is that it really doesn't take 00:15:29.480 --> 00:15:33.288 very many of us to achieve spectacular results. 00:15:33.288 --> 00:15:36.000 You just have to be willing to be unreasonable, 00:15:36.000 --> 00:15:38.331 and the risk we're running is not the risk those 14 men 00:15:38.331 --> 00:15:40.199 who got yellow fever ran. Right? 00:15:40.199 --> 00:15:43.060 It's to be naked, digitally, in public. So you know more 00:15:43.060 --> 00:15:46.493 about me and my health than I know about you. It's asymmetric now. 00:15:46.493 --> 00:15:50.123 And being naked and alone can be terrifying. 00:15:50.123 --> 00:15:54.590 But to be naked in a group, voluntarily, can be quite beautiful. 00:15:54.590 --> 00:15:56.478 And so it doesn't take all of us. 00:15:56.478 --> 00:15:59.484 It just takes all of some of us. Thank you. 00:15:59.484 --> 00:16:05.074 (Applause)