WEBVTT 00:00:01.055 --> 00:00:02.206 It's an amazing thing 00:00:02.230 --> 00:00:06.212 that we're here to talk about the year of patients rising. 00:00:07.006 --> 00:00:08.726 You heard stories earlier today 00:00:08.750 --> 00:00:11.778 about patients who are taking control of their cases, 00:00:11.802 --> 00:00:12.957 patients who are saying, 00:00:12.981 --> 00:00:14.955 "You know what, I know what the odds are, 00:00:14.979 --> 00:00:17.129 but I'm going to look for more information. 00:00:17.153 --> 00:00:20.913 I'm going to define what the terms of my success are." 00:00:20.937 --> 00:00:24.726 I'm going to be sharing with you how, four years ago, I almost died -- 00:00:24.750 --> 00:00:27.633 found out I was, in fact, already almost dead -- 00:00:27.657 --> 00:00:29.895 and what I then found out 00:00:29.919 --> 00:00:32.121 about what's called the e-Patient movement. 00:00:32.145 --> 00:00:33.794 I'll explain what that term means. 00:00:33.818 --> 00:00:36.586 I had been blogging under the name "Patient Dave," 00:00:36.610 --> 00:00:37.984 and when I discovered this, 00:00:38.008 --> 00:00:40.306 I just renamed myself e-Patient Dave. NOTE Paragraph 00:00:40.679 --> 00:00:42.382 Regarding the word "patient": 00:00:42.406 --> 00:00:46.342 When I first started a few years ago getting involved in health care 00:00:46.366 --> 00:00:48.726 and attending meetings as just a casual observer, 00:00:48.750 --> 00:00:50.989 I noticed that people would talk about patients 00:00:51.013 --> 00:00:53.588 as if it was somebody who's not in the room here -- 00:00:53.612 --> 00:00:55.006 somebody out there. 00:00:55.030 --> 00:00:57.543 Some of our talks today, we still act like that. 00:00:57.567 --> 00:00:59.479 But I'm here to tell you: 00:00:59.503 --> 00:01:02.225 "patient" is not a third-person word. 00:01:02.885 --> 00:01:04.048 All right? 00:01:04.072 --> 00:01:07.292 You yourself will find yourself in a hospital bed -- 00:01:07.316 --> 00:01:08.971 or your mother, your child -- 00:01:08.995 --> 00:01:10.913 there are heads nodding, people who say, 00:01:10.937 --> 00:01:12.678 "Yes, I know exactly what you mean." NOTE Paragraph 00:01:12.702 --> 00:01:15.726 So when you hear what I'm going to talk about here today, 00:01:15.750 --> 00:01:18.780 first of all, I want to say that I am here 00:01:18.804 --> 00:01:21.384 on behalf of all the patients that I have ever met, 00:01:21.408 --> 00:01:23.111 all the ones I haven't met. 00:01:23.135 --> 00:01:26.908 This is about letting patients play a more active role 00:01:26.932 --> 00:01:29.909 in helping health care, in fixing health care. 00:01:29.933 --> 00:01:31.932 One of the senior doctors at my hospital, 00:01:31.956 --> 00:01:34.530 Charlie Safran, and his colleague, Warner Slack, 00:01:34.554 --> 00:01:36.072 have been saying for decades 00:01:36.096 --> 00:01:39.856 that the most underutilized resource in all of health care 00:01:39.880 --> 00:01:41.055 is the patient. 00:01:41.599 --> 00:01:44.265 They have been saying that since the 1970s. NOTE Paragraph 00:01:44.289 --> 00:01:46.245 Now, I'm going to step back in history. 00:01:46.269 --> 00:01:48.155 This is from July, 1969. 00:01:48.179 --> 00:01:49.841 I was a freshman in college, 00:01:49.865 --> 00:01:52.468 and this was when we first landed on the Moon. 00:01:52.853 --> 00:01:54.284 And it was the first time 00:01:54.308 --> 00:01:57.071 we had ever seen from another surface -- 00:01:57.095 --> 00:01:59.339 that's the place where you and I are right now, 00:01:59.363 --> 00:02:00.521 where we live. 00:02:00.545 --> 00:02:02.092 The world was changing. 00:02:02.116 --> 00:02:05.093 It was about to change in ways that nobody could foresee. 00:02:05.117 --> 00:02:08.775 A few weeks later, Woodstock happened. 00:02:09.385 --> 00:02:11.465 Three days of fun and music. 00:02:11.489 --> 00:02:13.589 Here, just for historical authenticity, 00:02:13.613 --> 00:02:15.412 is a picture of me in that year. NOTE Paragraph 00:02:15.436 --> 00:02:18.662 (Laughter) NOTE Paragraph 00:02:18.686 --> 00:02:20.663 Yeah, the wavy hair, the blue eyes -- 00:02:20.687 --> 00:02:21.900 it was really something. NOTE Paragraph 00:02:22.350 --> 00:02:24.327 That fall of 1969, 00:02:24.351 --> 00:02:26.238 the Whole Earth Catalog came out. 00:02:26.262 --> 00:02:29.726 It was a hippie journal of self-sufficiency. 00:02:29.750 --> 00:02:32.781 We think of hippies of being just hedonists, 00:02:32.805 --> 00:02:36.006 but there's a very strong component -- I was in that movement -- 00:02:36.030 --> 00:02:39.374 a very strong component of being responsible for yourself. 00:02:39.398 --> 00:02:43.295 This book's title's subtitle is "Access to Tools." 00:02:43.319 --> 00:02:45.615 It talked about how to build your own house, 00:02:45.639 --> 00:02:48.044 how to grow your own food, all kinds of things. 00:02:48.068 --> 00:02:49.472 In the 1980s, 00:02:49.496 --> 00:02:51.630 this young doctor, Tom Ferguson, 00:02:51.654 --> 00:02:54.281 was the medical editor of the Whole Earth Catalog. 00:02:54.305 --> 00:02:59.076 He saw that the great majority of what we do in medicine and health care 00:02:59.100 --> 00:03:00.575 is taking care of ourselves. 00:03:01.011 --> 00:03:03.362 In fact, he said it was 70 to 80 percent 00:03:03.386 --> 00:03:05.655 of how we actually take care of our bodies. 00:03:05.679 --> 00:03:10.357 Well, he also saw that when health care turns to medical care 00:03:10.381 --> 00:03:12.291 because of a more serious disease, 00:03:12.315 --> 00:03:15.639 the key thing that holds us back is access to information. 00:03:15.663 --> 00:03:18.929 And when the Web came along, that changed everything, 00:03:18.953 --> 00:03:21.546 because not only could we find information, 00:03:21.570 --> 00:03:24.286 we could find other people like ourselves 00:03:24.310 --> 00:03:26.901 who could gather, who could bring us information. 00:03:26.925 --> 00:03:29.440 And he coined this term "e-Patients" -- 00:03:29.464 --> 00:03:31.795 equipped, engaged, empowered, enabled. 00:03:31.819 --> 00:03:33.520 Obviously, at this stage of life 00:03:33.544 --> 00:03:37.511 he was in a somewhat more dignified form than he was back then. NOTE Paragraph 00:03:37.535 --> 00:03:41.489 Now, I was an engaged patient long before I ever heard of the term. 00:03:41.513 --> 00:03:44.489 In 2006, I went to my doctor for a regular physical, 00:03:44.513 --> 00:03:46.812 and I had said, "I have a sore shoulder." 00:03:46.836 --> 00:03:48.409 Well, I got an X-ray, 00:03:48.433 --> 00:03:50.081 and the next morning -- 00:03:50.105 --> 00:03:53.630 you may have noticed, those of you who have been through a medical crisis 00:03:53.654 --> 00:03:54.854 will understand this. 00:03:54.878 --> 00:03:59.340 This morning, some of the speakers named the date when they found out 00:03:59.364 --> 00:04:00.635 about their condition. 00:04:00.659 --> 00:04:03.072 For me, it was 9am 00:04:03.096 --> 00:04:05.800 on January 3, 2007. 00:04:05.824 --> 00:04:08.319 I was at the office; my desk was clean. 00:04:08.343 --> 00:04:11.650 I had the blue partition carpet on the walls. 00:04:12.087 --> 00:04:14.137 The phone rang and it was my doctor. 00:04:14.907 --> 00:04:17.726 He said, "Dave, I pulled up the X-ray image 00:04:17.750 --> 00:04:19.840 on the screen on the computer at home." 00:04:19.864 --> 00:04:21.931 He said, "Your shoulder is going to be fine, 00:04:21.955 --> 00:04:24.040 but Dave, there's something in your lung." 00:04:24.064 --> 00:04:25.972 And if you look in that red oval, 00:04:25.996 --> 00:04:28.799 that shadow was not supposed to be there. 00:04:29.750 --> 00:04:31.726 To make a long story short, 00:04:31.750 --> 00:04:33.905 I said, "So you need me to get back in there?" 00:04:33.929 --> 00:04:37.180 He said, "Yeah, we're going to need to do a CT scan of your chest." 00:04:37.204 --> 00:04:39.845 In parting, I said, "Is there anything I should do?" 00:04:39.869 --> 00:04:41.726 He said -- think about this one, 00:04:41.750 --> 00:04:43.726 this is the advice your doctor gives you: 00:04:43.750 --> 00:04:46.750 "Just go home and have a glass of wine with your wife." NOTE Paragraph 00:04:49.023 --> 00:04:50.849 I went in for the CAT scan. 00:04:52.218 --> 00:04:55.445 It turns out there were five of these things in both my lungs. 00:04:55.469 --> 00:04:57.631 So at that point we knew that it was cancer. 00:04:57.655 --> 00:04:59.259 We knew it wasn't lung cancer. 00:04:59.718 --> 00:05:02.235 That meant it was metastasized from somewhere. 00:05:03.128 --> 00:05:04.791 The question was, where from? 00:05:05.234 --> 00:05:07.860 So I went in for an ultrasound. 00:05:07.884 --> 00:05:10.377 I got to do what many women have -- 00:05:10.401 --> 00:05:13.256 the jelly on the belly and the, "Bzzzz!" 00:05:13.750 --> 00:05:15.388 My wife came with me. 00:05:15.935 --> 00:05:17.540 She's a veterinarian, 00:05:17.564 --> 00:05:19.361 so she's seen lots of ultrasounds. 00:05:19.385 --> 00:05:20.969 I mean, she knows I'm not a dog. NOTE Paragraph 00:05:20.993 --> 00:05:22.637 (Laughter) NOTE Paragraph 00:05:22.661 --> 00:05:25.638 This is an MRI image. 00:05:25.662 --> 00:05:28.084 This is much sharper than an ultrasound would be. 00:05:28.108 --> 00:05:30.009 What we saw in that kidney 00:05:30.882 --> 00:05:32.393 was that big blob there. 00:05:32.417 --> 00:05:35.457 There were actually two of these: one was growing out the front 00:05:35.481 --> 00:05:37.904 and had already erupted and latched onto the bowel. 00:05:37.928 --> 00:05:41.147 One was growing out the back and it attached to the psoas muscle, 00:05:41.171 --> 00:05:43.956 which is a big muscle in the back that I'd never heard of, 00:05:43.980 --> 00:05:45.813 but all of a sudden I cared about it. NOTE Paragraph 00:05:45.837 --> 00:05:46.836 (Laughter) NOTE Paragraph 00:05:46.860 --> 00:05:48.023 I went home. NOTE Paragraph 00:05:48.047 --> 00:05:49.321 Now, I've been Googling -- 00:05:49.345 --> 00:05:51.735 I've been online since 1989, on CompuServe. 00:05:51.759 --> 00:05:54.389 I went home, and I know you can't read the details here; 00:05:54.413 --> 00:05:55.579 that's not important. 00:05:55.603 --> 00:05:59.807 My point is, I went to a respected medical website, WebMD, 00:05:59.831 --> 00:06:02.089 because I know how to filter out junk. 00:06:02.113 --> 00:06:04.089 I also found my wife online. 00:06:04.638 --> 00:06:06.320 Before I met her, 00:06:06.344 --> 00:06:08.820 I went through some suboptimal search results. NOTE Paragraph 00:06:08.844 --> 00:06:10.392 (Laughter) NOTE Paragraph 00:06:10.416 --> 00:06:13.570 So I looked for quality information. 00:06:13.594 --> 00:06:15.326 There's so much about trust -- 00:06:15.350 --> 00:06:17.853 what sources of information can we trust? 00:06:17.877 --> 00:06:22.641 Where does my body end and an invader start? 00:06:22.665 --> 00:06:25.803 A cancer, a tumor, is something you grow out of your own tissue. 00:06:25.827 --> 00:06:27.392 How does that happen? 00:06:27.416 --> 00:06:31.435 Where does medical ability end and start? 00:06:31.459 --> 00:06:33.344 Well, so what I read on WebMD: 00:06:33.915 --> 00:06:38.901 "The prognosis is poor for progressing renal cell cancer. 00:06:38.925 --> 00:06:41.139 Almost all patients are incurable." 00:06:42.307 --> 00:06:46.022 I've been online long enough to know if I don't like the first results I get, 00:06:46.046 --> 00:06:47.199 I go look for more. 00:06:47.223 --> 00:06:49.885 And what I found on other websites was, 00:06:49.909 --> 00:06:52.273 even by the third page of Google results: 00:06:52.297 --> 00:06:53.731 "Outlook is bleak." 00:06:54.352 --> 00:06:56.328 "Prognosis is grim." 00:06:56.939 --> 00:06:59.035 And I'm thinking, "What the heck?" 00:06:59.059 --> 00:07:00.791 I didn't feel sick at all. 00:07:00.815 --> 00:07:03.005 I mean, I'd been getting tired in the evening, 00:07:03.029 --> 00:07:05.045 but I was 56 years old, you know? 00:07:05.069 --> 00:07:06.726 I was slowly losing weight, 00:07:06.750 --> 00:07:10.640 but for me, that was what the doctor told me to do. 00:07:10.998 --> 00:07:12.670 It was really something. NOTE Paragraph 00:07:12.694 --> 00:07:15.874 And this is the diagram of stage 4 kidney cancer 00:07:15.898 --> 00:07:17.655 from the drug I eventually got. 00:07:17.679 --> 00:07:20.245 Totally by coincidence, there's that thing in my lung. 00:07:20.749 --> 00:07:23.726 In the left femur, the left thigh bone, there's another one. 00:07:23.750 --> 00:07:26.115 I had one. My leg eventually snapped. 00:07:26.139 --> 00:07:29.061 I fainted and landed on it, and it broke. 00:07:29.085 --> 00:07:30.333 There's one in the skull, 00:07:30.357 --> 00:07:32.820 and then for good measure, I had these other tumors, 00:07:32.844 --> 00:07:34.915 including, by the time my treatment started, 00:07:34.939 --> 00:07:36.528 one was growing out of my tongue. 00:07:36.552 --> 00:07:38.696 I had kidney cancer growing out of my tongue. 00:07:38.720 --> 00:07:39.879 And what I read 00:07:39.903 --> 00:07:42.291 was that my median survival was 24 weeks. 00:07:43.164 --> 00:07:44.619 This was bad. 00:07:44.643 --> 00:07:46.439 I was facing the grave. 00:07:47.043 --> 00:07:49.617 I thought, "What's my mother's face going to look like 00:07:49.641 --> 00:07:50.951 on the day of my funeral?" 00:07:51.345 --> 00:07:56.830 I had to sit down with my daughter and say, "Here's the situation." 00:07:56.854 --> 00:07:58.268 Her boyfriend was with her. 00:07:58.292 --> 00:08:01.093 I said, "I don't want you guys to get married prematurely, 00:08:01.117 --> 00:08:03.899 just so you can do it while Dad's still alive." 00:08:05.079 --> 00:08:06.648 It's really serious. 00:08:06.672 --> 00:08:10.252 If you wonder why patients are motivated and want to help, 00:08:10.276 --> 00:08:11.434 think about this. NOTE Paragraph 00:08:11.458 --> 00:08:15.488 Well, my doctor prescribed a patient community, ACOR.org, 00:08:15.512 --> 00:08:18.726 a network of cancer patients, of all amazing things. 00:08:18.750 --> 00:08:20.726 Very quickly they told me, 00:08:20.750 --> 00:08:22.726 "Kidney cancer is an uncommon disease. 00:08:22.750 --> 00:08:24.727 Get yourself to a specialist center. 00:08:24.751 --> 00:08:27.750 There is no cure, but there's something that sometimes works -- 00:08:27.774 --> 00:08:29.330 it usually doesn't -- 00:08:29.354 --> 00:08:31.168 called high-dosage interleukin. 00:08:31.192 --> 00:08:33.200 Most hospitals don't offer it, 00:08:33.224 --> 00:08:35.399 so they won't even tell you it exists. 00:08:35.423 --> 00:08:37.542 Don't let them give you anything else first. 00:08:37.566 --> 00:08:40.939 And by the way, here are four doctors in your part of the United States 00:08:40.963 --> 00:08:42.914 who offer it, and their phone numbers." 00:08:42.938 --> 00:08:45.376 How amazing is that? NOTE Paragraph 00:08:45.400 --> 00:08:48.214 (Applause) NOTE Paragraph 00:08:48.238 --> 00:08:49.434 Here's the thing: 00:08:49.458 --> 00:08:51.046 Here we are, four years later -- 00:08:51.070 --> 00:08:54.646 you can't find a website that gives patients that information. 00:08:54.670 --> 00:08:57.203 Government-approved, American Cancer Society, 00:08:57.227 --> 00:09:00.203 but patients know what patients want to know. 00:09:00.834 --> 00:09:03.605 It's the power of patient networks. 00:09:03.629 --> 00:09:06.858 This amazing substance -- again, I mentioned: 00:09:06.882 --> 00:09:08.236 Where does my body end? 00:09:08.260 --> 00:09:10.654 My oncologist and I talk a lot these days 00:09:10.678 --> 00:09:13.179 because I try to keep my talks technically accurate. 00:09:13.203 --> 00:09:17.531 And he said, "You know, the immune system is good at detecting invaders, 00:09:18.277 --> 00:09:20.594 bacteria coming from outside, 00:09:20.618 --> 00:09:23.092 but when it's your own tissue that you've grown, 00:09:23.116 --> 00:09:24.635 it's a whole different thing." 00:09:24.659 --> 00:09:27.615 And I went through a mental exercise, actually, 00:09:27.639 --> 00:09:32.457 because I started a patient support community of my own on a website, 00:09:32.481 --> 00:09:35.515 and one of my friends -- one of my relatives, actually -- said, 00:09:35.539 --> 00:09:37.289 "Look, Dave, who grew this thing? 00:09:38.894 --> 00:09:42.917 Are you going to set yourself up as mentally attacking yourself?" 00:09:42.941 --> 00:09:44.545 So we went into it. 00:09:44.569 --> 00:09:47.286 The story of how all that happened is in the book. NOTE Paragraph 00:09:47.310 --> 00:09:49.734 Anyway, this is the way the numbers unfolded. 00:09:49.758 --> 00:09:52.889 Me being me, I put the numbers from my hospital's website, 00:09:52.913 --> 00:09:54.072 for my tumor sizes, 00:09:54.096 --> 00:09:55.247 into a spreadsheet. 00:09:55.271 --> 00:09:56.726 Don't worry about the numbers. 00:09:56.750 --> 00:09:58.502 You see, that's the immune system. 00:09:58.526 --> 00:10:00.503 Amazing thing, those two yellow lines 00:10:00.527 --> 00:10:04.726 are where I got the two doses of interleukin two months apart. 00:10:04.750 --> 00:10:07.880 And look at how the tumor sizes plummeted in between. 00:10:07.904 --> 00:10:09.363 Just incredible. 00:10:09.387 --> 00:10:12.817 Who knows what we'll be able to do when we learn to make more use of it? NOTE Paragraph 00:10:12.841 --> 00:10:15.157 The punch line is that a year and a half later, 00:10:15.181 --> 00:10:19.481 I was there when this magnificent young woman, my daughter, 00:10:19.505 --> 00:10:20.668 got married. 00:10:20.692 --> 00:10:22.503 And when she came down those steps, 00:10:23.091 --> 00:10:25.321 and it was just her and me for that moment, 00:10:25.345 --> 00:10:28.567 I was so glad that she didn't have to say to her mother, 00:10:28.591 --> 00:10:30.647 "I wish Dad could have been here." 00:10:30.671 --> 00:10:34.551 And this is what we're doing when we make health care better. NOTE Paragraph 00:10:34.575 --> 00:10:37.478 Now, I want to talk briefly about a couple of other patients 00:10:37.502 --> 00:10:40.511 who are doing everything in their power to improve health care. 00:10:40.535 --> 00:10:42.174 This is Regina Holliday, 00:10:42.198 --> 00:10:46.397 a painter in Washington DC, whose husband died of kidney cancer 00:10:46.421 --> 00:10:47.921 a year after my disease. 00:10:47.945 --> 00:10:49.726 She's painting, here, a mural 00:10:49.750 --> 00:10:52.726 of his horrible final weeks in the hospital. 00:10:52.750 --> 00:10:55.197 One of the things that she discovered 00:10:55.221 --> 00:10:59.505 was that her husband's medical record in this paper folder 00:10:59.529 --> 00:11:01.055 was just disorganized. 00:11:01.079 --> 00:11:04.344 And she thought, "You know, if I have a nutrition facts label 00:11:04.368 --> 00:11:06.091 on the side of a cereal box, 00:11:06.115 --> 00:11:08.070 why can't there be something that simple 00:11:08.094 --> 00:11:10.638 telling every new nurse who comes on duty, 00:11:10.662 --> 00:11:11.887 every new doctor, 00:11:11.911 --> 00:11:14.021 the basics about my husband's condition?" 00:11:14.045 --> 00:11:19.321 So she painted this medical facts mural with a nutrition label, 00:11:19.345 --> 00:11:20.502 something like that, 00:11:20.526 --> 00:11:21.726 in a diagram of him. 00:11:21.750 --> 00:11:24.726 She then, last year, painted this diagram. NOTE Paragraph 00:11:24.750 --> 00:11:26.634 She studied health care like me. 00:11:26.658 --> 00:11:29.094 She came to realize there were a lot of people 00:11:29.118 --> 00:11:31.128 who'd written patient-advocate books 00:11:31.152 --> 00:11:33.995 that you just don't hear about at medical conferences. 00:11:34.019 --> 00:11:36.774 Patients are such an underutilized resource. 00:11:37.679 --> 00:11:39.404 Well, as it said in my introduction, 00:11:39.428 --> 00:11:41.210 I've gotten somewhat known for saying 00:11:41.234 --> 00:11:43.441 that patients should have access to their data. 00:11:43.465 --> 00:11:46.141 I actually said at one conference a couple of years ago, 00:11:46.165 --> 00:11:47.328 "Give me my damn data, 00:11:47.352 --> 00:11:49.955 because you people can't be trusted to keep it clean." 00:11:49.979 --> 00:11:52.726 And here, she has our "damned" data -- 00:11:52.750 --> 00:11:54.044 it's a pun -- 00:11:54.068 --> 00:11:56.996 which is starting to break out, starting to break through -- 00:11:57.020 --> 00:11:59.116 the water symbolizes our data. NOTE Paragraph 00:11:59.140 --> 00:12:00.291 And in fact, 00:12:00.315 --> 00:12:03.019 I want to do a little something improvisational for you. 00:12:03.043 --> 00:12:06.912 There's a guy on Twitter that I know, a health IT guy outside Boston, 00:12:06.936 --> 00:12:09.468 and he wrote the e-Patient rap. 00:12:09.492 --> 00:12:11.190 And it goes like this. NOTE Paragraph 00:12:11.214 --> 00:12:12.832 (Laughter) NOTE Paragraph 00:12:12.856 --> 00:12:16.916 (Beatboxing) NOTE Paragraph 00:12:16.940 --> 00:12:18.965 (Rapping) Gimme my damn data 00:12:18.989 --> 00:12:21.457 I wanna be an e-Patient just like Dave 00:12:21.481 --> 00:12:24.017 Gimme my damn data, 'cause it's my life to save 00:12:24.041 --> 00:12:26.619 (Normal voice) Now, I'm not going to go any further -- NOTE Paragraph 00:12:26.643 --> 00:12:33.174 (Applause) (Cheering) NOTE Paragraph 00:12:41.005 --> 00:12:43.410 Well, thank you. That shot the timing. NOTE Paragraph 00:12:43.434 --> 00:12:45.075 (Laughter) NOTE Paragraph 00:12:45.099 --> 00:12:46.570 Think about the possibility. 00:12:46.594 --> 00:12:50.980 Why is it that iPhones and iPads advance far faster 00:12:51.004 --> 00:12:53.244 than the health tools that are available to you 00:12:53.268 --> 00:12:55.496 to help take care of your family? 00:12:55.520 --> 00:12:59.640 Here's a website, VisibleBody.com, that I stumbled across. 00:12:59.664 --> 00:13:02.598 And I thought, "You know, I wonder what my psoas muscle is?" 00:13:02.622 --> 00:13:04.599 So you can click on things and remove it. 00:13:04.623 --> 00:13:07.600 And I saw, "Aha! That's the kidney and the psoas muscle." 00:13:07.624 --> 00:13:11.585 I was rotating it in 3D and saying, "I understand now." 00:13:11.609 --> 00:13:14.544 And then I realized it reminded me of Google Earth, 00:13:14.568 --> 00:13:16.881 where you can fly to any address. 00:13:17.345 --> 00:13:22.673 And I thought, "Why not take this and connect it to my digital scan data 00:13:22.697 --> 00:13:24.981 and have Google Earth for my body?" 00:13:25.606 --> 00:13:27.726 What did Google come out with this year? 00:13:27.750 --> 00:13:29.754 Now there's Google Body browser. 00:13:30.358 --> 00:13:32.335 But you see, it's still generic. 00:13:32.359 --> 00:13:34.239 It's not my data. 00:13:34.263 --> 00:13:37.337 But if we can get that data out from behind the dam 00:13:37.361 --> 00:13:40.338 so software innovators can pounce on it 00:13:40.362 --> 00:13:42.638 the way software innovators like to do, 00:13:42.662 --> 00:13:44.848 who knows what we'll be able to come up with. NOTE Paragraph 00:13:44.872 --> 00:13:46.023 One final story. 00:13:46.047 --> 00:13:50.622 This is Kelly Young, a rheumatoid arthritis patient from Florida. 00:13:50.998 --> 00:13:54.517 This is a live story, unfolding just in the last few weeks. 00:13:54.541 --> 00:14:00.085 RA patients, as they call themselves -- her blog is "RA Warrior" -- 00:14:00.109 --> 00:14:01.466 have a big problem, 00:14:01.490 --> 00:14:04.268 because 40 percent of them have no visible symptoms. 00:14:04.750 --> 00:14:07.808 And that makes it really hard to tell how the disease is going, 00:14:07.832 --> 00:14:10.989 and some doctors think, "Yeah right, you're really in pain." 00:14:11.013 --> 00:14:13.726 Well, she found, through her online research, 00:14:13.750 --> 00:14:17.138 a nuclear bone scan that's usually used for cancer, 00:14:17.162 --> 00:14:19.951 but it can also reveal inflammation. 00:14:19.975 --> 00:14:23.885 And she saw that if there is no inflammation, 00:14:23.909 --> 00:14:26.369 then the scan is a uniform gray. 00:14:26.393 --> 00:14:27.588 So she took it. 00:14:27.612 --> 00:14:31.893 And the radiologist's report said, "No cancer found." 00:14:31.917 --> 00:14:34.396 Well, that's not what he was supposed to do with it. 00:14:34.420 --> 00:14:36.841 So she wanted to have it read again, 00:14:36.865 --> 00:14:38.726 and her doctor fired her. 00:14:38.750 --> 00:14:40.633 She pulled up the CD. 00:14:40.657 --> 00:14:44.364 He said, "If you don't want to follow my instructions, go away." 00:14:44.959 --> 00:14:47.726 So she pulled up the CD of the scan images, 00:14:47.750 --> 00:14:49.726 and look at all those hot spots. 00:14:49.750 --> 00:14:52.726 And she's now actively engaged on her blog 00:14:52.750 --> 00:14:55.545 in looking for assistance in getting better care. 00:14:56.060 --> 00:14:58.852 See, that is an empowered patient -- no medical training. NOTE Paragraph 00:14:58.876 --> 00:15:00.847 We are, you are, 00:15:00.871 --> 00:15:03.566 the most underused resource in health care. 00:15:03.590 --> 00:15:05.106 What she was able to do 00:15:05.130 --> 00:15:07.872 was because she had access to the raw data. 00:15:07.896 --> 00:15:09.268 How big a deal was this? 00:15:09.292 --> 00:15:11.038 Well at TED2009, 00:15:11.062 --> 00:15:14.336 Tim Berners-Lee himself, inventor of the Web, 00:15:14.360 --> 00:15:17.337 gave a talk where he said the next big thing 00:15:17.361 --> 00:15:22.036 is not to have your browser find other people's articles about the data, 00:15:22.060 --> 00:15:23.242 but the raw data. 00:15:23.266 --> 00:15:26.036 And he got them chanting by the end of the talk, 00:15:26.060 --> 00:15:29.727 "Raw data now! Raw data now!" 00:15:29.751 --> 00:15:31.265 And I ask you, 00:15:31.289 --> 00:15:34.005 three words, please, to improve health care: 00:15:34.567 --> 00:15:36.544 Let patients help! 00:15:36.568 --> 00:15:38.282 Let patients help! 00:15:38.306 --> 00:15:40.161 Let patients help! 00:15:40.185 --> 00:15:42.103 Let patients help! NOTE Paragraph 00:15:42.127 --> 00:15:43.391 Thank you. NOTE Paragraph 00:15:43.415 --> 00:15:50.183 (Applause) NOTE Paragraph 00:16:00.162 --> 00:16:05.548 For all the patients around the world watching this on the Webcast, 00:16:05.572 --> 00:16:07.893 God bless you, everyone. Let patients help. NOTE Paragraph 00:16:07.917 --> 00:16:10.555 Host: And bless yourself. Thank you very much.