[Script Info] Title: [Events] Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text Dialogue: 0,0:00:21.36,0:00:22.51,Default,,0000,0000,0000,,It's an amazing thing Dialogue: 0,0:00:22.53,0:00:26.51,Default,,0000,0000,0000,,that we're here to talk\Nabout the year of patients rising. Dialogue: 0,0:00:27.31,0:00:29.03,Default,,0000,0000,0000,,You heard stories earlier today Dialogue: 0,0:00:29.05,0:00:32.08,Default,,0000,0000,0000,,about patients who are taking\Ncontrol of their cases, Dialogue: 0,0:00:32.10,0:00:33.26,Default,,0000,0000,0000,,patients who are saying, Dialogue: 0,0:00:33.28,0:00:35.26,Default,,0000,0000,0000,,"You know what, I know what the odds are, Dialogue: 0,0:00:35.28,0:00:37.43,Default,,0000,0000,0000,,but I'm going to look\Nfor more information. Dialogue: 0,0:00:37.45,0:00:41.21,Default,,0000,0000,0000,,I'm going to define\Nwhat the terms of my success are." Dialogue: 0,0:00:41.24,0:00:45.03,Default,,0000,0000,0000,,I'm going to be sharing with you\Nhow, four years ago, I almost died... Dialogue: 0,0:00:45.05,0:00:47.93,Default,,0000,0000,0000,,Found out I was, in fact,\Nalready almost dead... Dialogue: 0,0:00:47.96,0:00:50.20,Default,,0000,0000,0000,,And what I then found out Dialogue: 0,0:00:50.22,0:00:52.42,Default,,0000,0000,0000,,about what's called\Nthe e-Patient movement. Dialogue: 0,0:00:52.44,0:00:54.09,Default,,0000,0000,0000,,I'll explain what that term means. Dialogue: 0,0:00:54.12,0:00:56.89,Default,,0000,0000,0000,,I had been blogging\Nunder the name "Patient Dave," Dialogue: 0,0:00:56.91,0:00:58.28,Default,,0000,0000,0000,,and when I discovered this, Dialogue: 0,0:00:58.31,0:01:00.61,Default,,0000,0000,0000,,I just renamed myself e-Patient Dave. Dialogue: 0,0:01:00.98,0:01:02.68,Default,,0000,0000,0000,,Regarding the word "patient": Dialogue: 0,0:01:02.71,0:01:06.64,Default,,0000,0000,0000,,When I first started a few years ago\Ngetting involved in health care Dialogue: 0,0:01:06.67,0:01:09.03,Default,,0000,0000,0000,,and attending meetings\Nas just a casual observer, Dialogue: 0,0:01:09.05,0:01:11.29,Default,,0000,0000,0000,,I noticed that people\Nwould talk about patients Dialogue: 0,0:01:11.31,0:01:13.89,Default,,0000,0000,0000,,as if it was somebody\Nwho's not in the room here... Dialogue: 0,0:01:13.91,0:01:15.31,Default,,0000,0000,0000,,Somebody out there. Dialogue: 0,0:01:15.33,0:01:17.84,Default,,0000,0000,0000,,Some of our talks today,\Nwe still act like that. Dialogue: 0,0:01:17.87,0:01:19.78,Default,,0000,0000,0000,,But I'm here to tell you: Dialogue: 0,0:01:19.80,0:01:22.52,Default,,0000,0000,0000,,"patient" is not a third-person word. Dialogue: 0,0:01:23.18,0:01:24.35,Default,,0000,0000,0000,,All right? Dialogue: 0,0:01:24.37,0:01:27.59,Default,,0000,0000,0000,,You yourself will find\Nyourself in a hospital bed... Dialogue: 0,0:01:27.62,0:01:29.27,Default,,0000,0000,0000,,Or your mother, your child... Dialogue: 0,0:01:29.30,0:01:31.21,Default,,0000,0000,0000,,There are heads nodding, people who say, Dialogue: 0,0:01:31.24,0:01:32.98,Default,,0000,0000,0000,,"Yes, I know exactly what you mean." Dialogue: 0,0:01:33.00,0:01:36.03,Default,,0000,0000,0000,,So when you hear what I'm going\Nto talk about here today, Dialogue: 0,0:01:36.05,0:01:39.08,Default,,0000,0000,0000,,first of all, I want to say that I am here Dialogue: 0,0:01:39.10,0:01:41.68,Default,,0000,0000,0000,,on behalf of all the patients\Nthat I have ever met, Dialogue: 0,0:01:41.71,0:01:43.41,Default,,0000,0000,0000,,all the ones I haven't met. Dialogue: 0,0:01:43.44,0:01:47.21,Default,,0000,0000,0000,,This is about letting patients\Nplay a more active role Dialogue: 0,0:01:47.23,0:01:50.21,Default,,0000,0000,0000,,in helping health care,\Nin fixing health care. Dialogue: 0,0:01:50.23,0:01:52.23,Default,,0000,0000,0000,,One of the senior doctors at my hospital, Dialogue: 0,0:01:52.26,0:01:54.83,Default,,0000,0000,0000,,Charlie Safran,\Nand his colleague, Warner Slack, Dialogue: 0,0:01:54.85,0:01:56.37,Default,,0000,0000,0000,,have been saying for decades Dialogue: 0,0:01:56.40,0:02:00.16,Default,,0000,0000,0000,,that the most underutilized\Nresource in all of health care Dialogue: 0,0:02:00.18,0:02:01.36,Default,,0000,0000,0000,,is the patient. Dialogue: 0,0:02:03.10,0:02:05.76,Default,,0000,0000,0000,,They have been saying that\Nsince the 1970s. Dialogue: 0,0:02:05.79,0:02:07.74,Default,,0000,0000,0000,,Now, I'm going to step back in history. Dialogue: 0,0:02:07.77,0:02:09.66,Default,,0000,0000,0000,,This is from July, 1969. Dialogue: 0,0:02:09.68,0:02:11.34,Default,,0000,0000,0000,,I was a freshman in college, Dialogue: 0,0:02:11.36,0:02:13.97,Default,,0000,0000,0000,,and this was when we first\Nlanded on the Moon. Dialogue: 0,0:02:14.35,0:02:15.78,Default,,0000,0000,0000,,And it was the first time Dialogue: 0,0:02:15.81,0:02:18.57,Default,,0000,0000,0000,,we had ever seen from another surface... Dialogue: 0,0:02:18.60,0:02:20.84,Default,,0000,0000,0000,,That's the place\Nwhere you and I are right now, Dialogue: 0,0:02:20.86,0:02:22.02,Default,,0000,0000,0000,,where we live. Dialogue: 0,0:02:22.04,0:02:23.59,Default,,0000,0000,0000,,The world was changing. Dialogue: 0,0:02:23.62,0:02:26.59,Default,,0000,0000,0000,,It was about to change\Nin ways that nobody could foresee. Dialogue: 0,0:02:26.62,0:02:30.28,Default,,0000,0000,0000,,A few weeks later, Woodstock happened. Dialogue: 0,0:02:30.88,0:02:32.95,Default,,0000,0000,0000,,Three days of fun and music. Dialogue: 0,0:02:32.100,0:02:37.73,Default,,0000,0000,0000,,Now, Sophie, earlier today,\Ntalked about sex, drugs and rock and roll. Dialogue: 0,0:02:37.79,0:02:39.89,Default,,0000,0000,0000,,Here, just for historical authenticity, Dialogue: 0,0:02:39.91,0:02:41.71,Default,,0000,0000,0000,,is a picture of me in that year. Dialogue: 0,0:02:41.74,0:02:44.96,Default,,0000,0000,0000,,(Laughter) Dialogue: 0,0:02:44.99,0:02:46.96,Default,,0000,0000,0000,,Yeah, the wavy hair, the blue eyes... Dialogue: 0,0:02:46.99,0:02:48.20,Default,,0000,0000,0000,,It was really something. Dialogue: 0,0:02:48.22,0:02:53.73,Default,,0000,0000,0000,,I won't say which of those activities\NI was participating in at this moment. Dialogue: 0,0:02:55.73,0:03:00.28,Default,,0000,0000,0000,,There's a TEDActive talk\Nby Sebastian Wernicke - Dialogue: 0,0:03:00.31,0:03:01.78,Default,,0000,0000,0000,,he's an analytics guy, Dialogue: 0,0:03:01.82,0:03:04.97,Default,,0000,0000,0000,,and he looked at all the TEDTalks\Nthat had ever been done, Dialogue: 0,0:03:04.100,0:03:06.79,Default,,0000,0000,0000,,and how highly rated they were. Dialogue: 0,0:03:06.83,0:03:09.04,Default,,0000,0000,0000,,Now, any smart person\Nwho is trying to improve Dialogue: 0,0:03:09.08,0:03:10.47,Default,,0000,0000,0000,,looks at data, right? Dialogue: 0,0:03:10.52,0:03:12.77,Default,,0000,0000,0000,,It turns out that the most\Nhighly rated speakers Dialogue: 0,0:03:12.78,0:03:16.03,Default,,0000,0000,0000,,have hair that's longer than averige,\Nso I just had to include that. Dialogue: 0,0:03:16.07,0:03:17.54,Default,,0000,0000,0000,,(Laughter) Dialogue: 0,0:03:17.55,0:03:19.53,Default,,0000,0000,0000,,That fall of 1969, Dialogue: 0,0:03:19.55,0:03:21.44,Default,,0000,0000,0000,,the Whole Earth Catalog came out. Dialogue: 0,0:03:21.46,0:03:24.93,Default,,0000,0000,0000,,It was a hippie journal\Nof self-sufficiency. Dialogue: 0,0:03:25.45,0:03:28.48,Default,,0000,0000,0000,,We think of hippies\Nof being just hedonists, Dialogue: 0,0:03:28.50,0:03:31.71,Default,,0000,0000,0000,,but there's a very strong component...\NI was in that movement... Dialogue: 0,0:03:31.73,0:03:35.07,Default,,0000,0000,0000,,A very strong component\Nof being responsible for yourself. Dialogue: 0,0:03:35.10,0:03:38.100,Default,,0000,0000,0000,,This book's title's subtitle\Nis "Access to Tools." Dialogue: 0,0:03:39.02,0:03:41.32,Default,,0000,0000,0000,,It talked about how to build\Nyour own house, Dialogue: 0,0:03:41.34,0:03:43.74,Default,,0000,0000,0000,,how to grow your own food,\Nall kinds of things. Dialogue: 0,0:03:43.77,0:03:45.17,Default,,0000,0000,0000,,In the 1980s, Dialogue: 0,0:03:45.20,0:03:47.33,Default,,0000,0000,0000,,this young doctor, Tom Ferguson, Dialogue: 0,0:03:47.35,0:03:49.98,Default,,0000,0000,0000,,was the medical editor\Nof the Whole Earth Catalog. Dialogue: 0,0:03:51.70,0:03:56.48,Default,,0000,0000,0000,,He saw that the great majority\Nof what we do in medicine and health care Dialogue: 0,0:03:56.50,0:03:57.98,Default,,0000,0000,0000,,is taking care of ourselves. Dialogue: 0,0:03:59.41,0:04:01.76,Default,,0000,0000,0000,,In fact, he said it was 70 to 80 percent Dialogue: 0,0:04:01.79,0:04:04.06,Default,,0000,0000,0000,,of how we actually\Ntake care of our bodies. Dialogue: 0,0:04:04.08,0:04:08.76,Default,,0000,0000,0000,,Well, he also saw that when health care\Nturns to medical care Dialogue: 0,0:04:08.78,0:04:10.69,Default,,0000,0000,0000,,because of a more serious disease, Dialogue: 0,0:04:10.72,0:04:14.04,Default,,0000,0000,0000,,the key thing that holds us back\Nis access to information. Dialogue: 0,0:04:14.06,0:04:17.33,Default,,0000,0000,0000,,And when the Web came along,\Nthat changed everything, Dialogue: 0,0:04:17.35,0:04:19.95,Default,,0000,0000,0000,,because not only\Ncould we find information, Dialogue: 0,0:04:19.97,0:04:22.69,Default,,0000,0000,0000,,we could find other people like ourselves Dialogue: 0,0:04:22.71,0:04:25.30,Default,,0000,0000,0000,,who could gather,\Nwho could bring us information. Dialogue: 0,0:04:25.32,0:04:27.84,Default,,0000,0000,0000,,And he coined this term "e-Patients"... Dialogue: 0,0:04:27.86,0:04:30.20,Default,,0000,0000,0000,,Equipped, engaged, empowered, enabled. Dialogue: 0,0:04:30.22,0:04:31.92,Default,,0000,0000,0000,,Obviously, at this stage of life Dialogue: 0,0:04:31.94,0:04:35.91,Default,,0000,0000,0000,,he was in a somewhat more dignified\Nform than he was back then. Dialogue: 0,0:04:35.94,0:04:39.89,Default,,0000,0000,0000,,Now, I was an engaged patient\Nlong before I ever heard of the term. Dialogue: 0,0:04:39.91,0:04:42.89,Default,,0000,0000,0000,,In 2006, I went to my doctor\Nfor a regular physical, Dialogue: 0,0:04:42.91,0:04:45.21,Default,,0000,0000,0000,,and I had said, "I have a sore shoulder." Dialogue: 0,0:04:45.24,0:04:46.81,Default,,0000,0000,0000,,Well, I got an X-ray, Dialogue: 0,0:04:46.83,0:04:48.48,Default,,0000,0000,0000,,and the next morning... Dialogue: 0,0:04:48.50,0:04:52.03,Default,,0000,0000,0000,,You may have noticed, those of you\Nwho have been through a medical crisis Dialogue: 0,0:04:52.05,0:04:53.25,Default,,0000,0000,0000,,will understand this. Dialogue: 0,0:04:53.28,0:04:57.74,Default,,0000,0000,0000,,This morning, some of the speakers\Nnamed the date when they found out Dialogue: 0,0:04:57.76,0:04:59.04,Default,,0000,0000,0000,,about their condition. Dialogue: 0,0:04:59.06,0:05:01.47,Default,,0000,0000,0000,,For me, it was 9am Dialogue: 0,0:05:01.50,0:05:04.20,Default,,0000,0000,0000,,on January 3, 2007. Dialogue: 0,0:05:04.22,0:05:06.72,Default,,0000,0000,0000,,I was at the office; my desk was clean. Dialogue: 0,0:05:06.74,0:05:10.05,Default,,0000,0000,0000,,I had the blue partition\Ncarpet on the walls. Dialogue: 0,0:05:10.19,0:05:12.24,Default,,0000,0000,0000,,The phone rang and it was my doctor. Dialogue: 0,0:05:13.01,0:05:15.83,Default,,0000,0000,0000,,He said, "Dave, I pulled\Nup the X-ray image Dialogue: 0,0:05:15.85,0:05:17.94,Default,,0000,0000,0000,,on the screen on the computer at home." - Dialogue: 0,0:05:17.95,0:05:21.02,Default,,0000,0000,0000,,don't you just love\Ndigital information flow? - Dialogue: 0,0:05:21.06,0:05:23.13,Default,,0000,0000,0000,,He said, "Your shoulder\Nis going to be fine, Dialogue: 0,0:05:23.16,0:05:25.24,Default,,0000,0000,0000,,but Dave, there's something in your lung." Dialogue: 0,0:05:25.26,0:05:27.17,Default,,0000,0000,0000,,And if you look in that red oval, Dialogue: 0,0:05:27.20,0:05:29.100,Default,,0000,0000,0000,,that shadow was not supposed to be there. Dialogue: 0,0:05:31.25,0:05:33.23,Default,,0000,0000,0000,,To make a long story short - Dialogue: 0,0:05:33.68,0:05:35.79,Default,,0000,0000,0000,,we talked about it a little bit - Dialogue: 0,0:05:36.15,0:05:38.30,Default,,0000,0000,0000,,I said, "So you need me\Nto get back in there?" Dialogue: 0,0:05:38.33,0:05:41.58,Default,,0000,0000,0000,,He said, "Yeah, we're going to need\Nto do a CT scan of your chest." Dialogue: 0,0:05:41.60,0:05:44.24,Default,,0000,0000,0000,,In parting, I said,\N"Is there anything I should do?" Dialogue: 0,0:05:44.27,0:05:46.13,Default,,0000,0000,0000,,He said... think about this one, Dialogue: 0,0:05:46.15,0:05:48.13,Default,,0000,0000,0000,,this is the advice your doctor gives you: Dialogue: 0,0:05:48.15,0:05:51.15,Default,,0000,0000,0000,,"Just go home and have a glass\Nof wine with your wife." Dialogue: 0,0:05:53.92,0:05:55.75,Default,,0000,0000,0000,,I went in for the CAT scan. Dialogue: 0,0:05:57.12,0:06:00.34,Default,,0000,0000,0000,,It turns out there were\Nfive of these things in both my lungs. Dialogue: 0,0:06:00.37,0:06:02.53,Default,,0000,0000,0000,,So at that point we knew\Nthat it was cancer. Dialogue: 0,0:06:02.56,0:06:04.16,Default,,0000,0000,0000,,We knew it wasn't lung cancer. Dialogue: 0,0:06:04.62,0:06:07.14,Default,,0000,0000,0000,,That meant it was metastasized\Nfrom somewhere. Dialogue: 0,0:06:08.03,0:06:09.69,Default,,0000,0000,0000,,The question was, where from? Dialogue: 0,0:06:10.13,0:06:12.76,Default,,0000,0000,0000,,So I went in for an ultrasound. Dialogue: 0,0:06:12.78,0:06:15.28,Default,,0000,0000,0000,,I got to do what many women have... Dialogue: 0,0:06:15.30,0:06:18.16,Default,,0000,0000,0000,,The jelly on the belly and the, "Bzzzz!" Dialogue: 0,0:06:18.65,0:06:20.29,Default,,0000,0000,0000,,My wife came with me. Dialogue: 0,0:06:20.84,0:06:22.44,Default,,0000,0000,0000,,She's a veterinarian, Dialogue: 0,0:06:22.46,0:06:24.26,Default,,0000,0000,0000,,so she's seen lots of ultrasounds. Dialogue: 0,0:06:24.28,0:06:25.87,Default,,0000,0000,0000,,I mean, she knows I'm not a dog. Dialogue: 0,0:06:25.89,0:06:27.54,Default,,0000,0000,0000,,(Laughter) Dialogue: 0,0:06:27.56,0:06:28.88,Default,,0000,0000,0000,,What we saw - Dialogue: 0,0:06:29.36,0:06:30.86,Default,,0000,0000,0000,,This is an MRI image. Dialogue: 0,0:06:30.86,0:06:33.28,Default,,0000,0000,0000,,This is much sharper\Nthan an ultrasound would be. Dialogue: 0,0:06:33.31,0:06:35.21,Default,,0000,0000,0000,,What we saw in that kidney Dialogue: 0,0:06:35.78,0:06:37.29,Default,,0000,0000,0000,,was that big blob there. Dialogue: 0,0:06:37.32,0:06:40.36,Default,,0000,0000,0000,,There were actually two of these:\None was growing out the front Dialogue: 0,0:06:40.38,0:06:42.80,Default,,0000,0000,0000,,and had already erupted\Nand latched onto the bowel. Dialogue: 0,0:06:42.83,0:06:46.05,Default,,0000,0000,0000,,One was growing out the back\Nand it attached to the psoas muscle, Dialogue: 0,0:06:46.07,0:06:48.86,Default,,0000,0000,0000,,which is a big muscle in the back\Nthat I'd never heard of, Dialogue: 0,0:06:48.88,0:06:50.71,Default,,0000,0000,0000,,but all of a sudden I cared about it. Dialogue: 0,0:06:50.74,0:06:51.74,Default,,0000,0000,0000,,(Laughter) Dialogue: 0,0:06:51.76,0:06:52.92,Default,,0000,0000,0000,,I went home. Dialogue: 0,0:06:52.95,0:06:54.22,Default,,0000,0000,0000,,Now, I've been Googling... Dialogue: 0,0:06:54.24,0:06:56.64,Default,,0000,0000,0000,,I've been online since 1989,\Non CompuServe. Dialogue: 0,0:06:56.66,0:06:59.29,Default,,0000,0000,0000,,I went home, and I know\Nyou can't read the details here; Dialogue: 0,0:06:59.31,0:07:00.48,Default,,0000,0000,0000,,that's not important. Dialogue: 0,0:07:00.50,0:07:04.71,Default,,0000,0000,0000,,My point is, I went to a respected\Nmedical website, WebMD, Dialogue: 0,0:07:05.03,0:07:07.29,Default,,0000,0000,0000,,because I know how to filter out junk. Dialogue: 0,0:07:08.02,0:07:09.100,Default,,0000,0000,0000,,I also found my wife online. Dialogue: 0,0:07:11.24,0:07:12.92,Default,,0000,0000,0000,,Before I met her, Dialogue: 0,0:07:12.94,0:07:15.42,Default,,0000,0000,0000,,I went through some suboptimal\Nsearch results. Dialogue: 0,0:07:15.44,0:07:16.99,Default,,0000,0000,0000,,(Laughter) Dialogue: 0,0:07:17.02,0:07:20.17,Default,,0000,0000,0000,,So I looked for quality information. Dialogue: 0,0:07:20.19,0:07:21.93,Default,,0000,0000,0000,,There's so much about trust... Dialogue: 0,0:07:21.95,0:07:24.45,Default,,0000,0000,0000,,What sources of information can we trust? Dialogue: 0,0:07:24.48,0:07:29.24,Default,,0000,0000,0000,,Where does my body end\Nand an invader start? Dialogue: 0,0:07:29.26,0:07:32.40,Default,,0000,0000,0000,,A cancer, a tumor, is something\Nyou grow out of your own tissue. Dialogue: 0,0:07:32.43,0:07:33.99,Default,,0000,0000,0000,,How does that happen? Dialogue: 0,0:07:34.02,0:07:38.04,Default,,0000,0000,0000,,Where does medical ability end and start? Dialogue: 0,0:07:38.06,0:07:39.94,Default,,0000,0000,0000,,Well, so what I read on WebMD: Dialogue: 0,0:07:40.52,0:07:46.90,Default,,0000,0000,0000,,"The prognosis is poor\Nfor progressing renal cell cancer. Dialogue: 0,0:07:46.92,0:07:49.14,Default,,0000,0000,0000,,Almost all patients are incurable." Dialogue: 0,0:07:50.31,0:07:54.02,Default,,0000,0000,0000,,I've been online long enough to know\Nif I don't like the first results I get, Dialogue: 0,0:07:54.05,0:07:55.20,Default,,0000,0000,0000,,I go look for more. Dialogue: 0,0:07:55.22,0:07:57.88,Default,,0000,0000,0000,,And what I found on other websites was, Dialogue: 0,0:07:57.91,0:08:00.27,Default,,0000,0000,0000,,even by the third page of Google results: Dialogue: 0,0:08:00.30,0:08:01.73,Default,,0000,0000,0000,,"Outlook is bleak." Dialogue: 0,0:08:02.65,0:08:04.63,Default,,0000,0000,0000,,"Prognosis is grim." Dialogue: 0,0:08:05.24,0:08:07.34,Default,,0000,0000,0000,,And I'm thinking, "What the heck?" Dialogue: 0,0:08:07.36,0:08:09.09,Default,,0000,0000,0000,,I didn't feel sick at all. Dialogue: 0,0:08:09.12,0:08:11.30,Default,,0000,0000,0000,,I mean, I'd been getting\Ntired in the evening, Dialogue: 0,0:08:11.33,0:08:13.34,Default,,0000,0000,0000,,but I was 56 years old, you know? Dialogue: 0,0:08:13.37,0:08:15.03,Default,,0000,0000,0000,,I was slowly losing weight, Dialogue: 0,0:08:15.05,0:08:17.90,Default,,0000,0000,0000,,but for me, that was what\Nthe doctor told me to do. Dialogue: 0,0:08:19.30,0:08:20.97,Default,,0000,0000,0000,,It was really something. Dialogue: 0,0:08:20.99,0:08:24.17,Default,,0000,0000,0000,,And this is the diagram\Nof stage 4 kidney cancer Dialogue: 0,0:08:24.20,0:08:25.96,Default,,0000,0000,0000,,from the drug I eventually got. Dialogue: 0,0:08:25.98,0:08:28.54,Default,,0000,0000,0000,,Totally by coincidence,\Nthere's that thing in my lung. Dialogue: 0,0:08:29.05,0:08:32.02,Default,,0000,0000,0000,,In the left femur, the left thigh bone,\Nthere's another one. Dialogue: 0,0:08:32.05,0:08:34.41,Default,,0000,0000,0000,,I had one. My leg eventually snapped. Dialogue: 0,0:08:34.44,0:08:37.36,Default,,0000,0000,0000,,I fainted and landed on it, and it broke. Dialogue: 0,0:08:37.38,0:08:38.63,Default,,0000,0000,0000,,There's one in the skull, Dialogue: 0,0:08:38.66,0:08:41.12,Default,,0000,0000,0000,,and then for good measure,\NI had these other tumors, Dialogue: 0,0:08:41.14,0:08:43.22,Default,,0000,0000,0000,,including, by the time\Nmy treatment started, Dialogue: 0,0:08:43.24,0:08:44.83,Default,,0000,0000,0000,,one was growing out of my tongue. Dialogue: 0,0:08:44.85,0:08:46.100,Default,,0000,0000,0000,,I had kidney cancer\Ngrowing out of my tongue. Dialogue: 0,0:08:47.02,0:08:48.18,Default,,0000,0000,0000,,And what I read Dialogue: 0,0:08:48.20,0:08:50.59,Default,,0000,0000,0000,,was that my median survival was 24 weeks. Dialogue: 0,0:08:51.46,0:08:52.92,Default,,0000,0000,0000,,This was bad. Dialogue: 0,0:08:52.94,0:08:54.74,Default,,0000,0000,0000,,I was facing the grave. Dialogue: 0,0:08:55.34,0:08:57.92,Default,,0000,0000,0000,,I thought, "What's my mother's face\Ngoing to look like Dialogue: 0,0:08:57.94,0:08:59.25,Default,,0000,0000,0000,,on the day of my funeral?" Dialogue: 0,0:08:59.64,0:09:05.13,Default,,0000,0000,0000,,I had to sit down with my daughter\Nand say, "Here's the situation." Dialogue: 0,0:09:05.15,0:09:06.57,Default,,0000,0000,0000,,Her boyfriend was with her. Dialogue: 0,0:09:06.59,0:09:09.39,Default,,0000,0000,0000,,I said, "I don't want you guys\Nto get married prematurely, Dialogue: 0,0:09:09.42,0:09:12.20,Default,,0000,0000,0000,,just so you can do it\Nwhile Dad's still alive." Dialogue: 0,0:09:13.38,0:09:14.95,Default,,0000,0000,0000,,It's really serious. Dialogue: 0,0:09:15.57,0:09:19.15,Default,,0000,0000,0000,,If you wonder why patients\Nare motivated and want to help, Dialogue: 0,0:09:19.18,0:09:20.33,Default,,0000,0000,0000,,think about this. Dialogue: 0,0:09:20.36,0:09:24.39,Default,,0000,0000,0000,,Well, my doctor prescribed\Na patient community, ACOR.org, Dialogue: 0,0:09:24.41,0:09:27.63,Default,,0000,0000,0000,,a network of cancer patients,\Nof all amazing things. Dialogue: 0,0:09:27.65,0:09:29.63,Default,,0000,0000,0000,,Very quickly they told me, Dialogue: 0,0:09:29.65,0:09:31.63,Default,,0000,0000,0000,,"Kidney cancer is an uncommon disease. Dialogue: 0,0:09:31.65,0:09:33.63,Default,,0000,0000,0000,,Get yourself to a specialist center. Dialogue: 0,0:09:33.65,0:09:36.65,Default,,0000,0000,0000,,There is no cure, but there's something\Nthat sometimes works... Dialogue: 0,0:09:36.67,0:09:38.23,Default,,0000,0000,0000,,It usually doesn't... Dialogue: 0,0:09:38.25,0:09:40.07,Default,,0000,0000,0000,,Called high-dosage interleukin. Dialogue: 0,0:09:40.09,0:09:42.10,Default,,0000,0000,0000,,Most hospitals don't offer it, Dialogue: 0,0:09:42.12,0:09:44.30,Default,,0000,0000,0000,,so they won't even tell you it exists. Dialogue: 0,0:09:44.32,0:09:46.44,Default,,0000,0000,0000,,Don't let them give you\Nanything else first. Dialogue: 0,0:09:46.47,0:09:49.84,Default,,0000,0000,0000,,And by the way, here are four doctors\Nin your part of the United States Dialogue: 0,0:09:49.86,0:09:51.81,Default,,0000,0000,0000,,who offer it, and their phone numbers." Dialogue: 0,0:09:51.84,0:09:54.28,Default,,0000,0000,0000,,How amazing is that? Dialogue: 0,0:09:54.30,0:09:56.38,Default,,0000,0000,0000,,(Applause) Dialogue: 0,0:09:56.44,0:09:57.63,Default,,0000,0000,0000,,Here's the thing: Dialogue: 0,0:09:57.66,0:09:59.25,Default,,0000,0000,0000,,Here we are, four years later... Dialogue: 0,0:09:59.27,0:10:02.85,Default,,0000,0000,0000,,You can't find a website\Nthat gives patients that information. Dialogue: 0,0:10:02.87,0:10:05.40,Default,,0000,0000,0000,,Government-approved,\NAmerican Cancer Society, Dialogue: 0,0:10:05.43,0:10:08.40,Default,,0000,0000,0000,,but patients know\Nwhat patients want to know. Dialogue: 0,0:10:09.03,0:10:11.80,Default,,0000,0000,0000,,It's the power of patient networks. Dialogue: 0,0:10:11.83,0:10:15.06,Default,,0000,0000,0000,,This amazing substance...\NAgain, I mentioned: Dialogue: 0,0:10:15.08,0:10:16.44,Default,,0000,0000,0000,,Where does my body end? Dialogue: 0,0:10:16.46,0:10:18.85,Default,,0000,0000,0000,,My oncologist and I talk a lot these days Dialogue: 0,0:10:18.88,0:10:21.38,Default,,0000,0000,0000,,because I try to keep my talks\Ntechnically accurate. Dialogue: 0,0:10:21.40,0:10:25.73,Default,,0000,0000,0000,,And he said, "You know, the immune\Nsystem is good at detecting invaders, Dialogue: 0,0:10:26.48,0:10:28.79,Default,,0000,0000,0000,,bacteria coming from outside, Dialogue: 0,0:10:28.82,0:10:31.29,Default,,0000,0000,0000,,but when it's your own tissue\Nthat you've grown, Dialogue: 0,0:10:31.32,0:10:32.84,Default,,0000,0000,0000,,it's a whole different thing." Dialogue: 0,0:10:32.86,0:10:35.82,Default,,0000,0000,0000,,And I went through\Na mental exercise, actually, Dialogue: 0,0:10:35.84,0:10:40.66,Default,,0000,0000,0000,,because I started a patient support\Ncommunity of my own on a website, Dialogue: 0,0:10:40.68,0:10:43.72,Default,,0000,0000,0000,,and one of my friends...\NOne of my relatives, actually... said, Dialogue: 0,0:10:43.74,0:10:45.49,Default,,0000,0000,0000,,"Look, Dave, who grew this thing? Dialogue: 0,0:10:47.09,0:10:51.12,Default,,0000,0000,0000,,Are you going to set yourself up\Nas mentally attacking yourself?" Dialogue: 0,0:10:51.14,0:10:52.74,Default,,0000,0000,0000,,So we went into it. Dialogue: 0,0:10:52.77,0:10:55.49,Default,,0000,0000,0000,,The story of how all that\Nhappened is in the book. Dialogue: 0,0:10:55.51,0:10:57.93,Default,,0000,0000,0000,,Anyway, this is the way\Nthe numbers unfolded. Dialogue: 0,0:10:57.96,0:11:01.09,Default,,0000,0000,0000,,Me being me, I put the numbers\Nfrom my hospital's website, Dialogue: 0,0:11:01.11,0:11:02.27,Default,,0000,0000,0000,,for my tumor sizes, Dialogue: 0,0:11:02.30,0:11:03.45,Default,,0000,0000,0000,,into a spreadsheet. Dialogue: 0,0:11:03.47,0:11:04.93,Default,,0000,0000,0000,,Don't worry about the numbers. Dialogue: 0,0:11:04.95,0:11:06.70,Default,,0000,0000,0000,,You see, that's the immune system. Dialogue: 0,0:11:06.73,0:11:09.10,Default,,0000,0000,0000,,Amazing thing, those two yellow lines Dialogue: 0,0:11:09.13,0:11:13.33,Default,,0000,0000,0000,,are where I got the two doses\Nof interleukin two months apart. Dialogue: 0,0:11:13.35,0:11:16.48,Default,,0000,0000,0000,,And look at how the tumor sizes\Nplummeted in between. Dialogue: 0,0:11:16.50,0:11:17.96,Default,,0000,0000,0000,,Just incredible. Dialogue: 0,0:11:17.99,0:11:21.42,Default,,0000,0000,0000,,Who knows what we'll be able to do\Nwhen we learn to make more use of it? Dialogue: 0,0:11:21.44,0:11:23.76,Default,,0000,0000,0000,,The punch line is that a year\Nand a half later, Dialogue: 0,0:11:23.78,0:11:28.08,Default,,0000,0000,0000,,I was there when this magnificent\Nyoung woman, my daughter, Dialogue: 0,0:11:28.10,0:11:29.27,Default,,0000,0000,0000,,got married. Dialogue: 0,0:11:29.29,0:11:31.10,Default,,0000,0000,0000,,And when she came down those steps, Dialogue: 0,0:11:31.69,0:11:33.92,Default,,0000,0000,0000,,and it was just her and me\Nfor that moment, Dialogue: 0,0:11:33.94,0:11:37.17,Default,,0000,0000,0000,,I was so glad that she didn't have\Nto say to her mother, Dialogue: 0,0:11:37.19,0:11:39.25,Default,,0000,0000,0000,,"I wish Dad could have been here." Dialogue: 0,0:11:39.27,0:11:43.15,Default,,0000,0000,0000,,And this is what we're doing\Nwhen we make health care better. Dialogue: 0,0:11:43.18,0:11:46.08,Default,,0000,0000,0000,,Now, I want to talk briefly\Nabout a couple of other patients Dialogue: 0,0:11:46.10,0:11:49.11,Default,,0000,0000,0000,,who are doing everything\Nin their power to improve health care. Dialogue: 0,0:11:49.14,0:11:50.77,Default,,0000,0000,0000,,This is Regina Holliday, Dialogue: 0,0:11:50.80,0:11:54.100,Default,,0000,0000,0000,,a painter in Washington DC,\Nwhose husband died of kidney cancer Dialogue: 0,0:11:55.02,0:11:56.52,Default,,0000,0000,0000,,a year after my disease. Dialogue: 0,0:11:56.54,0:11:58.33,Default,,0000,0000,0000,,She's painting, here, a mural Dialogue: 0,0:11:58.35,0:12:01.33,Default,,0000,0000,0000,,of his horrible\Nfinal weeks in the hospital. Dialogue: 0,0:12:01.35,0:12:03.80,Default,,0000,0000,0000,,One of the things that she discovered Dialogue: 0,0:12:03.82,0:12:08.10,Default,,0000,0000,0000,,was that her husband's medical record\Nin this paper folder Dialogue: 0,0:12:08.13,0:12:09.66,Default,,0000,0000,0000,,was just disorganized. Dialogue: 0,0:12:09.68,0:12:12.94,Default,,0000,0000,0000,,And she thought, "You know,\Nif I have a nutrition facts label Dialogue: 0,0:12:12.97,0:12:14.69,Default,,0000,0000,0000,,on the side of a cereal box, Dialogue: 0,0:12:14.72,0:12:16.67,Default,,0000,0000,0000,,why can't there be something that simple Dialogue: 0,0:12:16.69,0:12:19.24,Default,,0000,0000,0000,,telling every new nurse who comes on duty, Dialogue: 0,0:12:19.26,0:12:20.49,Default,,0000,0000,0000,,every new doctor, Dialogue: 0,0:12:20.51,0:12:22.62,Default,,0000,0000,0000,,the basics about my husband's condition?" Dialogue: 0,0:12:22.64,0:12:27.92,Default,,0000,0000,0000,,So she painted this medical facts mural\Nwith a nutrition label, Dialogue: 0,0:12:27.94,0:12:29.10,Default,,0000,0000,0000,,something like that, Dialogue: 0,0:12:29.13,0:12:30.33,Default,,0000,0000,0000,,in a diagram of him. Dialogue: 0,0:12:30.35,0:12:34.32,Default,,0000,0000,0000,,She then, last year, painted this diagram. Dialogue: 0,0:12:34.35,0:12:36.23,Default,,0000,0000,0000,,She studied health care like me. Dialogue: 0,0:12:36.26,0:12:39.88,Default,,0000,0000,0000,,She came to realize\Nthere were a lot of people Dialogue: 0,0:12:39.92,0:12:41.93,Default,,0000,0000,0000,,who'd written patient-advocate books Dialogue: 0,0:12:41.95,0:12:44.80,Default,,0000,0000,0000,,that you just don't hear\Nabout at medical conferences. Dialogue: 0,0:12:44.82,0:12:47.57,Default,,0000,0000,0000,,Patients are such\Nan underutilized resource. Dialogue: 0,0:12:48.68,0:12:50.40,Default,,0000,0000,0000,,Well, as it said in my introduction, Dialogue: 0,0:12:50.43,0:12:52.21,Default,,0000,0000,0000,,I've gotten somewhat known for saying Dialogue: 0,0:12:52.23,0:12:54.44,Default,,0000,0000,0000,,that patients should have\Naccess to their data. Dialogue: 0,0:12:54.46,0:12:57.14,Default,,0000,0000,0000,,I actually said at one conference\Na couple of years ago, Dialogue: 0,0:12:57.16,0:12:58.33,Default,,0000,0000,0000,,"Give me my damn data, Dialogue: 0,0:12:58.35,0:13:00.96,Default,,0000,0000,0000,,because you people\Ncan't be trusted to keep it clean." Dialogue: 0,0:13:00.98,0:13:03.73,Default,,0000,0000,0000,,And here, she has our "damned" data... Dialogue: 0,0:13:03.75,0:13:05.04,Default,,0000,0000,0000,,It's a pun... Dialogue: 0,0:13:05.07,0:13:07.100,Default,,0000,0000,0000,,Which is starting to break out,\Nstarting to break through... Dialogue: 0,0:13:08.02,0:13:10.12,Default,,0000,0000,0000,,The water symbolizes our data. Dialogue: 0,0:13:10.14,0:13:11.29,Default,,0000,0000,0000,,And in fact, Dialogue: 0,0:13:11.32,0:13:14.02,Default,,0000,0000,0000,,I want to do a little something\Nimprovisational for you. Dialogue: 0,0:13:14.04,0:13:17.91,Default,,0000,0000,0000,,There's a guy on Twitter that I know,\Na health IT guy outside Boston, Dialogue: 0,0:13:17.94,0:13:20.47,Default,,0000,0000,0000,,and he wrote the e-Patient rap. Dialogue: 0,0:13:20.49,0:13:22.19,Default,,0000,0000,0000,,And it goes like this. Dialogue: 0,0:13:22.21,0:13:23.83,Default,,0000,0000,0000,,(Laughter) Dialogue: 0,0:13:23.86,0:13:27.92,Default,,0000,0000,0000,,(Beatboxing) Dialogue: 0,0:13:27.94,0:13:29.96,Default,,0000,0000,0000,,(Rapping) Gimme my damn data Dialogue: 0,0:13:29.99,0:13:32.46,Default,,0000,0000,0000,,I wanna be an e-Patient just like Dave Dialogue: 0,0:13:32.48,0:13:35.02,Default,,0000,0000,0000,,Gimme my damn data,\N'cause it's my life to save Dialogue: 0,0:13:35.04,0:13:37.62,Default,,0000,0000,0000,,(Normal voice) Now, I'm not going\Nto go any further... Dialogue: 0,0:13:37.64,0:13:44.17,Default,,0000,0000,0000,,(Applause) (Cheering) Dialogue: 0,0:13:52.00,0:13:54.41,Default,,0000,0000,0000,,Well, thank you. That shot the timing. Dialogue: 0,0:13:54.43,0:13:56.08,Default,,0000,0000,0000,,(Laughter) Dialogue: 0,0:13:56.10,0:13:57.57,Default,,0000,0000,0000,,Think about the possibility. Dialogue: 0,0:13:57.59,0:14:01.98,Default,,0000,0000,0000,,Why is it that iPhones and iPads\Nadvance far faster Dialogue: 0,0:14:02.00,0:14:04.24,Default,,0000,0000,0000,,than the health tools\Nthat are available to you Dialogue: 0,0:14:04.27,0:14:06.50,Default,,0000,0000,0000,,to help take care of your family? Dialogue: 0,0:14:06.52,0:14:11.32,Default,,0000,0000,0000,,Here's a website, VisibleBody.com,\Nthat I stumbled across. Dialogue: 0,0:14:11.36,0:14:14.30,Default,,0000,0000,0000,,And I thought, "You know,\NI wonder what my psoas muscle is?" Dialogue: 0,0:14:14.32,0:14:16.30,Default,,0000,0000,0000,,So you can click on things and remove it. Dialogue: 0,0:14:16.32,0:14:19.30,Default,,0000,0000,0000,,And I saw, "Aha! That's the kidney\Nand the psoas muscle." Dialogue: 0,0:14:19.32,0:14:23.28,Default,,0000,0000,0000,,I was rotating it in 3D\Nand saying, "I understand now." Dialogue: 0,0:14:23.31,0:14:26.24,Default,,0000,0000,0000,,And then I realized\Nit reminded me of Google Earth, Dialogue: 0,0:14:26.27,0:14:28.58,Default,,0000,0000,0000,,where you can fly to any address. Dialogue: 0,0:14:29.04,0:14:34.37,Default,,0000,0000,0000,,And I thought, "Why not take this\Nand connect it to my digital scan data Dialogue: 0,0:14:34.40,0:14:36.68,Default,,0000,0000,0000,,and have Google Earth for my body?" Dialogue: 0,0:14:37.31,0:14:39.43,Default,,0000,0000,0000,,What did Google come out with this year? Dialogue: 0,0:14:39.45,0:14:41.45,Default,,0000,0000,0000,,Now there's Google Body browser. Dialogue: 0,0:14:43.76,0:14:45.74,Default,,0000,0000,0000,,But you see, it's still generic. Dialogue: 0,0:14:45.76,0:14:47.64,Default,,0000,0000,0000,,It's not my data. Dialogue: 0,0:14:47.66,0:14:50.74,Default,,0000,0000,0000,,But if we can get that data\Nout from behind the dam Dialogue: 0,0:14:50.76,0:14:53.74,Default,,0000,0000,0000,,so software innovators can pounce on it Dialogue: 0,0:14:53.76,0:14:56.04,Default,,0000,0000,0000,,the way software innovators like to do, Dialogue: 0,0:14:56.06,0:14:58.25,Default,,0000,0000,0000,,who knows what we'll be able\Nto come up with. Dialogue: 0,0:14:58.27,0:14:59.42,Default,,0000,0000,0000,,One final story. Dialogue: 0,0:14:59.45,0:15:04.02,Default,,0000,0000,0000,,This is Kelly Young, a rheumatoid\Narthritis patient from Florida. Dialogue: 0,0:15:04.100,0:15:08.52,Default,,0000,0000,0000,,This is a live story,\Nunfolding just in the last few weeks. Dialogue: 0,0:15:08.54,0:15:14.08,Default,,0000,0000,0000,,RA patients, as they call themselves...\NHer blog is "RA Warrior"... Dialogue: 0,0:15:14.11,0:15:15.47,Default,,0000,0000,0000,,Have a big problem, Dialogue: 0,0:15:15.49,0:15:18.27,Default,,0000,0000,0000,,because 40 percent of them\Nhave no visible symptoms. Dialogue: 0,0:15:18.75,0:15:21.81,Default,,0000,0000,0000,,And that makes it really hard\Nto tell how the disease is going, Dialogue: 0,0:15:21.83,0:15:24.99,Default,,0000,0000,0000,,and some doctors think,\N"Yeah right, you're really in pain." Dialogue: 0,0:15:25.01,0:15:27.73,Default,,0000,0000,0000,,Well, she found,\Nthrough her online research, Dialogue: 0,0:15:27.75,0:15:31.14,Default,,0000,0000,0000,,a nuclear bone scan\Nthat's usually used for cancer, Dialogue: 0,0:15:31.16,0:15:34.43,Default,,0000,0000,0000,,but it can also reveal inflammation. Dialogue: 0,0:15:34.98,0:15:38.88,Default,,0000,0000,0000,,And she saw that\Nif there is no inflammation, Dialogue: 0,0:15:38.91,0:15:41.37,Default,,0000,0000,0000,,then the scan is a uniform gray. Dialogue: 0,0:15:41.39,0:15:43.59,Default,,0000,0000,0000,,So she took it. Dialogue: 0,0:15:43.61,0:15:47.89,Default,,0000,0000,0000,,And the radiologist's report\Nsaid, "No cancer found." Dialogue: 0,0:15:47.92,0:15:50.60,Default,,0000,0000,0000,,Well, that's not what\Nhe was supposed to do with it. Dialogue: 0,0:15:50.62,0:15:53.94,Default,,0000,0000,0000,,So she wanted to have it read again, Dialogue: 0,0:15:53.96,0:15:55.83,Default,,0000,0000,0000,,and her doctor fired her. Dialogue: 0,0:15:55.85,0:15:57.73,Default,,0000,0000,0000,,She pulled up the CD. Dialogue: 0,0:15:57.76,0:16:01.46,Default,,0000,0000,0000,,He said, "If you don't want to follow\Nmy instructions, go away." Dialogue: 0,0:16:02.06,0:16:04.83,Default,,0000,0000,0000,,So she pulled up the CD\Nof the scan images, Dialogue: 0,0:16:04.85,0:16:06.83,Default,,0000,0000,0000,,and look at all those hot spots. Dialogue: 0,0:16:06.85,0:16:09.83,Default,,0000,0000,0000,,And she's now actively engaged on her blog Dialogue: 0,0:16:09.85,0:16:12.64,Default,,0000,0000,0000,,in looking for assistance\Nin getting better care. Dialogue: 0,0:16:14.36,0:16:17.15,Default,,0000,0000,0000,,See, that is an empowered\Npatient... no medical training. Dialogue: 0,0:16:17.18,0:16:19.15,Default,,0000,0000,0000,,We are, you are, Dialogue: 0,0:16:19.17,0:16:21.87,Default,,0000,0000,0000,,the most underused\Nresource in health care. Dialogue: 0,0:16:21.89,0:16:23.41,Default,,0000,0000,0000,,What she was able to do Dialogue: 0,0:16:23.43,0:16:26.17,Default,,0000,0000,0000,,was because she had access\Nto the raw data. Dialogue: 0,0:16:26.20,0:16:27.57,Default,,0000,0000,0000,,How big a deal was this? Dialogue: 0,0:16:27.59,0:16:29.34,Default,,0000,0000,0000,,Well at TED2009, Dialogue: 0,0:16:29.36,0:16:32.64,Default,,0000,0000,0000,,Tim Berners-Lee himself,\Ninventor of the Web, Dialogue: 0,0:16:32.66,0:16:35.64,Default,,0000,0000,0000,,gave a talk where he said\Nthe next big thing Dialogue: 0,0:16:35.66,0:16:40.34,Default,,0000,0000,0000,,is not to have your browser find\Nother people's articles about the data, Dialogue: 0,0:16:40.36,0:16:41.54,Default,,0000,0000,0000,,but the raw data. Dialogue: 0,0:16:41.57,0:16:44.34,Default,,0000,0000,0000,,And he got them chanting\Nby the end of the talk, Dialogue: 0,0:16:44.36,0:16:48.03,Default,,0000,0000,0000,,"Raw data now! Raw data now!" Dialogue: 0,0:16:48.05,0:16:49.56,Default,,0000,0000,0000,,And I ask you, Dialogue: 0,0:16:49.59,0:16:52.30,Default,,0000,0000,0000,,three words, please,\Nto improve health care: Dialogue: 0,0:16:53.27,0:16:55.24,Default,,0000,0000,0000,,Let patients help! Dialogue: 0,0:16:55.27,0:16:56.98,Default,,0000,0000,0000,,Let patients help! Dialogue: 0,0:16:57.01,0:16:58.86,Default,,0000,0000,0000,,Let patients help! Dialogue: 0,0:16:58.88,0:17:00.80,Default,,0000,0000,0000,,Let patients help! Dialogue: 0,0:17:00.83,0:17:02.09,Default,,0000,0000,0000,,Thank you. Dialogue: 0,0:17:02.12,0:17:08.88,Default,,0000,0000,0000,,(Applause)