[Script Info]
Title: 
[Events]
Format: Layer, Start, End, Style, Name, MarginL, MarginR, MarginV, Effect, Text
Dialogue: 0,0:00:01.06,0:00:02.21,Default,,0000,0000,0000,,It's an amazing thing
Dialogue: 0,0:00:02.23,0:00:06.21,Default,,0000,0000,0000,,that we're here to talk\Nabout the year of patients rising.
Dialogue: 0,0:00:07.01,0:00:08.73,Default,,0000,0000,0000,,You heard stories earlier today
Dialogue: 0,0:00:08.75,0:00:11.78,Default,,0000,0000,0000,,about patients who are taking\Ncontrol of their cases,
Dialogue: 0,0:00:11.80,0:00:12.96,Default,,0000,0000,0000,,patients who are saying,
Dialogue: 0,0:00:12.98,0:00:14.96,Default,,0000,0000,0000,,"You know what, I know what the odds are,
Dialogue: 0,0:00:14.98,0:00:17.13,Default,,0000,0000,0000,,but I'm going to look\Nfor more information.
Dialogue: 0,0:00:17.15,0:00:20.91,Default,,0000,0000,0000,,I'm going to define\Nwhat the terms of my success are."
Dialogue: 0,0:00:20.94,0:00:24.73,Default,,0000,0000,0000,,I'm going to be sharing with you\Nhow, four years ago, I almost died --
Dialogue: 0,0:00:24.75,0:00:27.63,Default,,0000,0000,0000,,found out I was, in fact,\Nalready almost dead --
Dialogue: 0,0:00:27.66,0:00:29.90,Default,,0000,0000,0000,,and what I then found out
Dialogue: 0,0:00:29.92,0:00:32.12,Default,,0000,0000,0000,,about what's called\Nthe e-Patient movement.
Dialogue: 0,0:00:32.14,0:00:33.79,Default,,0000,0000,0000,,I'll explain what that term means.
Dialogue: 0,0:00:33.82,0:00:36.59,Default,,0000,0000,0000,,I had been blogging\Nunder the name "Patient Dave,"
Dialogue: 0,0:00:36.61,0:00:37.98,Default,,0000,0000,0000,,and when I discovered this,
Dialogue: 0,0:00:38.01,0:00:40.31,Default,,0000,0000,0000,,I just renamed myself e-Patient Dave.
Dialogue: 0,0:00:40.68,0:00:42.38,Default,,0000,0000,0000,,Regarding the word "patient":
Dialogue: 0,0:00:42.41,0:00:46.34,Default,,0000,0000,0000,,When I first started a few years ago\Ngetting involved in health care
Dialogue: 0,0:00:46.37,0:00:48.73,Default,,0000,0000,0000,,and attending meetings\Nas just a casual observer,
Dialogue: 0,0:00:48.75,0:00:50.99,Default,,0000,0000,0000,,I noticed that people\Nwould talk about patients
Dialogue: 0,0:00:51.01,0:00:53.59,Default,,0000,0000,0000,,as if it was somebody\Nwho's not in the room here --
Dialogue: 0,0:00:53.61,0:00:55.01,Default,,0000,0000,0000,,somebody out there.
Dialogue: 0,0:00:55.03,0:00:57.54,Default,,0000,0000,0000,,Some of our talks today,\Nwe still act like that.
Dialogue: 0,0:00:57.57,0:00:59.48,Default,,0000,0000,0000,,But I'm here to tell you:
Dialogue: 0,0:00:59.50,0:01:02.22,Default,,0000,0000,0000,,"patient" is not a third-person word.
Dialogue: 0,0:01:02.88,0:01:04.05,Default,,0000,0000,0000,,All right?
Dialogue: 0,0:01:04.07,0:01:07.29,Default,,0000,0000,0000,,You yourself will find\Nyourself in a hospital bed --
Dialogue: 0,0:01:07.32,0:01:08.97,Default,,0000,0000,0000,,or your mother, your child --
Dialogue: 0,0:01:08.100,0:01:10.91,Default,,0000,0000,0000,,there are heads nodding, people who say,
Dialogue: 0,0:01:10.94,0:01:12.68,Default,,0000,0000,0000,,"Yes, I know exactly what you mean."
Dialogue: 0,0:01:12.70,0:01:15.73,Default,,0000,0000,0000,,So when you hear what I'm going\Nto talk about here today,
Dialogue: 0,0:01:15.75,0:01:18.78,Default,,0000,0000,0000,,first of all, I want to say that I am here
Dialogue: 0,0:01:18.80,0:01:21.38,Default,,0000,0000,0000,,on behalf of all the patients\Nthat I have ever met,
Dialogue: 0,0:01:21.41,0:01:23.11,Default,,0000,0000,0000,,all the ones I haven't met.
Dialogue: 0,0:01:23.14,0:01:26.91,Default,,0000,0000,0000,,This is about letting patients\Nplay a more active role
Dialogue: 0,0:01:26.93,0:01:29.91,Default,,0000,0000,0000,,in helping health care,\Nin fixing health care.
Dialogue: 0,0:01:29.93,0:01:31.93,Default,,0000,0000,0000,,One of the senior doctors at my hospital,
Dialogue: 0,0:01:31.96,0:01:34.53,Default,,0000,0000,0000,,Charlie Safran,\Nand his colleague, Warner Slack,
Dialogue: 0,0:01:34.55,0:01:36.07,Default,,0000,0000,0000,,have been saying for decades
Dialogue: 0,0:01:36.10,0:01:39.86,Default,,0000,0000,0000,,that the most underutilized\Nresource in all of health care
Dialogue: 0,0:01:39.88,0:01:41.06,Default,,0000,0000,0000,,is the patient.
Dialogue: 0,0:01:41.60,0:01:44.26,Default,,0000,0000,0000,,They have been saying that\Nsince the 1970s.
Dialogue: 0,0:01:44.29,0:01:46.24,Default,,0000,0000,0000,,Now, I'm going to step back in history.
Dialogue: 0,0:01:46.27,0:01:48.16,Default,,0000,0000,0000,,This is from July, 1969.
Dialogue: 0,0:01:48.18,0:01:49.84,Default,,0000,0000,0000,,I was a freshman in college,
Dialogue: 0,0:01:49.86,0:01:52.47,Default,,0000,0000,0000,,and this was when we first\Nlanded on the Moon.
Dialogue: 0,0:01:52.85,0:01:54.28,Default,,0000,0000,0000,,And it was the first time
Dialogue: 0,0:01:54.31,0:01:57.07,Default,,0000,0000,0000,,we had ever seen from another surface --
Dialogue: 0,0:01:57.10,0:01:59.34,Default,,0000,0000,0000,,that's the place\Nwhere you and I are right now,
Dialogue: 0,0:01:59.36,0:02:00.52,Default,,0000,0000,0000,,where we live.
Dialogue: 0,0:02:00.54,0:02:02.09,Default,,0000,0000,0000,,The world was changing.
Dialogue: 0,0:02:02.12,0:02:05.09,Default,,0000,0000,0000,,It was about to change\Nin ways that nobody could foresee.
Dialogue: 0,0:02:05.12,0:02:08.78,Default,,0000,0000,0000,,A few weeks later, Woodstock happened.
Dialogue: 0,0:02:09.38,0:02:11.46,Default,,0000,0000,0000,,Three days of fun and music.
Dialogue: 0,0:02:11.49,0:02:13.59,Default,,0000,0000,0000,,Here, just for historical authenticity,
Dialogue: 0,0:02:13.61,0:02:15.41,Default,,0000,0000,0000,,is a picture of me in that year.
Dialogue: 0,0:02:15.44,0:02:18.66,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:02:18.69,0:02:20.66,Default,,0000,0000,0000,,Yeah, the wavy hair, the blue eyes --
Dialogue: 0,0:02:20.69,0:02:21.90,Default,,0000,0000,0000,,it was really something.
Dialogue: 0,0:02:22.35,0:02:24.33,Default,,0000,0000,0000,,That fall of 1969,
Dialogue: 0,0:02:24.35,0:02:26.24,Default,,0000,0000,0000,,the Whole Earth Catalog came out.
Dialogue: 0,0:02:26.26,0:02:29.73,Default,,0000,0000,0000,,It was a hippie journal\Nof self-sufficiency.
Dialogue: 0,0:02:29.75,0:02:32.78,Default,,0000,0000,0000,,We think of hippies\Nof being just hedonists,
Dialogue: 0,0:02:32.80,0:02:36.01,Default,,0000,0000,0000,,but there's a very strong component --\NI was in that movement --
Dialogue: 0,0:02:36.03,0:02:39.37,Default,,0000,0000,0000,,a very strong component\Nof being responsible for yourself.
Dialogue: 0,0:02:39.40,0:02:43.30,Default,,0000,0000,0000,,This book's title's subtitle\Nis "Access to Tools."
Dialogue: 0,0:02:43.32,0:02:45.62,Default,,0000,0000,0000,,It talked about how to build\Nyour own house,
Dialogue: 0,0:02:45.64,0:02:48.04,Default,,0000,0000,0000,,how to grow your own food,\Nall kinds of things.
Dialogue: 0,0:02:48.07,0:02:49.47,Default,,0000,0000,0000,,In the 1980s,
Dialogue: 0,0:02:49.50,0:02:51.63,Default,,0000,0000,0000,,this young doctor, Tom Ferguson,
Dialogue: 0,0:02:51.65,0:02:54.28,Default,,0000,0000,0000,,was the medical editor\Nof the Whole Earth Catalog.
Dialogue: 0,0:02:54.30,0:02:59.08,Default,,0000,0000,0000,,He saw that the great majority\Nof what we do in medicine and health care
Dialogue: 0,0:02:59.10,0:03:00.58,Default,,0000,0000,0000,,is taking care of ourselves.
Dialogue: 0,0:03:01.01,0:03:03.36,Default,,0000,0000,0000,,In fact, he said it was 70 to 80 percent
Dialogue: 0,0:03:03.39,0:03:05.66,Default,,0000,0000,0000,,of how we actually\Ntake care of our bodies.
Dialogue: 0,0:03:05.68,0:03:10.36,Default,,0000,0000,0000,,Well, he also saw that when health care\Nturns to medical care
Dialogue: 0,0:03:10.38,0:03:12.29,Default,,0000,0000,0000,,because of a more serious disease,
Dialogue: 0,0:03:12.32,0:03:15.64,Default,,0000,0000,0000,,the key thing that holds us back\Nis access to information.
Dialogue: 0,0:03:15.66,0:03:18.93,Default,,0000,0000,0000,,And when the Web came along,\Nthat changed everything,
Dialogue: 0,0:03:18.95,0:03:21.55,Default,,0000,0000,0000,,because not only\Ncould we find information,
Dialogue: 0,0:03:21.57,0:03:24.29,Default,,0000,0000,0000,,we could find other people like ourselves
Dialogue: 0,0:03:24.31,0:03:26.90,Default,,0000,0000,0000,,who could gather,\Nwho could bring us information.
Dialogue: 0,0:03:26.92,0:03:29.44,Default,,0000,0000,0000,,And he coined this term "e-Patients" --
Dialogue: 0,0:03:29.46,0:03:31.80,Default,,0000,0000,0000,,equipped, engaged, empowered, enabled.
Dialogue: 0,0:03:31.82,0:03:33.52,Default,,0000,0000,0000,,Obviously, at this stage of life
Dialogue: 0,0:03:33.54,0:03:37.51,Default,,0000,0000,0000,,he was in a somewhat more dignified\Nform than he was back then.
Dialogue: 0,0:03:37.54,0:03:41.49,Default,,0000,0000,0000,,Now, I was an engaged patient\Nlong before I ever heard of the term.
Dialogue: 0,0:03:41.51,0:03:44.49,Default,,0000,0000,0000,,In 2006, I went to my doctor\Nfor a regular physical,
Dialogue: 0,0:03:44.51,0:03:46.81,Default,,0000,0000,0000,,and I had said, "I have a sore shoulder."
Dialogue: 0,0:03:46.84,0:03:48.41,Default,,0000,0000,0000,,Well, I got an X-ray,
Dialogue: 0,0:03:48.43,0:03:50.08,Default,,0000,0000,0000,,and the next morning --
Dialogue: 0,0:03:50.10,0:03:53.63,Default,,0000,0000,0000,,you may have noticed, those of you\Nwho have been through a medical crisis
Dialogue: 0,0:03:53.65,0:03:54.85,Default,,0000,0000,0000,,will understand this.
Dialogue: 0,0:03:54.88,0:03:59.34,Default,,0000,0000,0000,,This morning, some of the speakers\Nnamed the date when they found out
Dialogue: 0,0:03:59.36,0:04:00.64,Default,,0000,0000,0000,,about their condition.
Dialogue: 0,0:04:00.66,0:04:03.07,Default,,0000,0000,0000,,For me, it was 9am
Dialogue: 0,0:04:03.10,0:04:05.80,Default,,0000,0000,0000,,on January 3, 2007.
Dialogue: 0,0:04:05.82,0:04:08.32,Default,,0000,0000,0000,,I was at the office; my desk was clean.
Dialogue: 0,0:04:08.34,0:04:11.65,Default,,0000,0000,0000,,I had the blue partition\Ncarpet on the walls.
Dialogue: 0,0:04:12.09,0:04:14.14,Default,,0000,0000,0000,,The phone rang and it was my doctor.
Dialogue: 0,0:04:14.91,0:04:17.73,Default,,0000,0000,0000,,He said, "Dave, I pulled\Nup the X-ray image
Dialogue: 0,0:04:17.75,0:04:19.84,Default,,0000,0000,0000,,on the screen on the computer at home."
Dialogue: 0,0:04:19.86,0:04:21.93,Default,,0000,0000,0000,,He said, "Your shoulder\Nis going to be fine,
Dialogue: 0,0:04:21.96,0:04:24.04,Default,,0000,0000,0000,,but Dave, there's something in your lung."
Dialogue: 0,0:04:24.06,0:04:25.97,Default,,0000,0000,0000,,And if you look in that red oval,
Dialogue: 0,0:04:25.100,0:04:28.80,Default,,0000,0000,0000,,that shadow was not supposed to be there.
Dialogue: 0,0:04:29.75,0:04:31.73,Default,,0000,0000,0000,,To make a long story short,
Dialogue: 0,0:04:31.75,0:04:33.90,Default,,0000,0000,0000,,I said, "So you need me\Nto get back in there?"
Dialogue: 0,0:04:33.93,0:04:37.18,Default,,0000,0000,0000,,He said, "Yeah, we're going to need\Nto do a CT scan of your chest."
Dialogue: 0,0:04:37.20,0:04:39.84,Default,,0000,0000,0000,,In parting, I said,\N"Is there anything I should do?"
Dialogue: 0,0:04:39.87,0:04:41.73,Default,,0000,0000,0000,,He said -- think about this one,
Dialogue: 0,0:04:41.75,0:04:43.73,Default,,0000,0000,0000,,this is the advice your doctor gives you:
Dialogue: 0,0:04:43.75,0:04:46.75,Default,,0000,0000,0000,,"Just go home and have a glass\Nof wine with your wife."
Dialogue: 0,0:04:49.02,0:04:50.85,Default,,0000,0000,0000,,I went in for the CAT scan.
Dialogue: 0,0:04:52.22,0:04:55.44,Default,,0000,0000,0000,,It turns out there were\Nfive of these things in both my lungs.
Dialogue: 0,0:04:55.47,0:04:57.63,Default,,0000,0000,0000,,So at that point we knew\Nthat it was cancer.
Dialogue: 0,0:04:57.66,0:04:59.26,Default,,0000,0000,0000,,We knew it wasn't lung cancer.
Dialogue: 0,0:04:59.72,0:05:02.24,Default,,0000,0000,0000,,That meant it was metastasized\Nfrom somewhere.
Dialogue: 0,0:05:03.13,0:05:04.79,Default,,0000,0000,0000,,The question was, where from?
Dialogue: 0,0:05:05.23,0:05:07.86,Default,,0000,0000,0000,,So I went in for an ultrasound.
Dialogue: 0,0:05:07.88,0:05:10.38,Default,,0000,0000,0000,,I got to do what many women have --
Dialogue: 0,0:05:10.40,0:05:13.26,Default,,0000,0000,0000,,the jelly on the belly and the, "Bzzzz!"
Dialogue: 0,0:05:13.75,0:05:15.39,Default,,0000,0000,0000,,My wife came with me.
Dialogue: 0,0:05:15.94,0:05:17.54,Default,,0000,0000,0000,,She's a veterinarian,
Dialogue: 0,0:05:17.56,0:05:19.36,Default,,0000,0000,0000,,so she's seen lots of ultrasounds.
Dialogue: 0,0:05:19.38,0:05:20.97,Default,,0000,0000,0000,,I mean, she knows I'm not a dog.
Dialogue: 0,0:05:20.99,0:05:22.64,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:05:22.66,0:05:25.64,Default,,0000,0000,0000,,This is an MRI image.
Dialogue: 0,0:05:25.66,0:05:28.08,Default,,0000,0000,0000,,This is much sharper\Nthan an ultrasound would be.
Dialogue: 0,0:05:28.11,0:05:30.01,Default,,0000,0000,0000,,What we saw in that kidney
Dialogue: 0,0:05:30.88,0:05:32.39,Default,,0000,0000,0000,,was that big blob there.
Dialogue: 0,0:05:32.42,0:05:35.46,Default,,0000,0000,0000,,There were actually two of these:\None was growing out the front
Dialogue: 0,0:05:35.48,0:05:37.90,Default,,0000,0000,0000,,and had already erupted\Nand latched onto the bowel.
Dialogue: 0,0:05:37.93,0:05:41.15,Default,,0000,0000,0000,,One was growing out the back\Nand it attached to the psoas muscle,
Dialogue: 0,0:05:41.17,0:05:43.96,Default,,0000,0000,0000,,which is a big muscle in the back\Nthat I'd never heard of,
Dialogue: 0,0:05:43.98,0:05:45.81,Default,,0000,0000,0000,,but all of a sudden I cared about it.
Dialogue: 0,0:05:45.84,0:05:46.84,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:05:46.86,0:05:48.02,Default,,0000,0000,0000,,I went home.
Dialogue: 0,0:05:48.05,0:05:49.32,Default,,0000,0000,0000,,Now, I've been Googling --
Dialogue: 0,0:05:49.34,0:05:51.74,Default,,0000,0000,0000,,I've been online since 1989,\Non CompuServe.
Dialogue: 0,0:05:51.76,0:05:54.39,Default,,0000,0000,0000,,I went home, and I know\Nyou can't read the details here;
Dialogue: 0,0:05:54.41,0:05:55.58,Default,,0000,0000,0000,,that's not important.
Dialogue: 0,0:05:55.60,0:05:59.81,Default,,0000,0000,0000,,My point is, I went to a respected\Nmedical website, WebMD,
Dialogue: 0,0:05:59.83,0:06:02.09,Default,,0000,0000,0000,,because I know how to filter out junk.
Dialogue: 0,0:06:02.11,0:06:04.09,Default,,0000,0000,0000,,I also found my wife online.
Dialogue: 0,0:06:04.64,0:06:06.32,Default,,0000,0000,0000,,Before I met her,
Dialogue: 0,0:06:06.34,0:06:08.82,Default,,0000,0000,0000,,I went through some suboptimal\Nsearch results.
Dialogue: 0,0:06:08.84,0:06:10.39,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:06:10.42,0:06:13.57,Default,,0000,0000,0000,,So I looked for quality information.
Dialogue: 0,0:06:13.59,0:06:15.33,Default,,0000,0000,0000,,There's so much about trust --
Dialogue: 0,0:06:15.35,0:06:17.85,Default,,0000,0000,0000,,what sources of information can we trust?
Dialogue: 0,0:06:17.88,0:06:22.64,Default,,0000,0000,0000,,Where does my body end\Nand an invader start?
Dialogue: 0,0:06:22.66,0:06:25.80,Default,,0000,0000,0000,,A cancer, a tumor, is something\Nyou grow out of your own tissue.
Dialogue: 0,0:06:25.83,0:06:27.39,Default,,0000,0000,0000,,How does that happen?
Dialogue: 0,0:06:27.42,0:06:31.44,Default,,0000,0000,0000,,Where does medical ability end and start?
Dialogue: 0,0:06:31.46,0:06:33.34,Default,,0000,0000,0000,,Well, so what I read on WebMD:
Dialogue: 0,0:06:33.92,0:06:38.90,Default,,0000,0000,0000,,"The prognosis is poor\Nfor progressing renal cell cancer.
Dialogue: 0,0:06:38.92,0:06:41.14,Default,,0000,0000,0000,,Almost all patients are incurable."
Dialogue: 0,0:06:42.31,0:06:46.02,Default,,0000,0000,0000,,I've been online long enough to know\Nif I don't like the first results I get,
Dialogue: 0,0:06:46.05,0:06:47.20,Default,,0000,0000,0000,,I go look for more.
Dialogue: 0,0:06:47.22,0:06:49.88,Default,,0000,0000,0000,,And what I found on other websites was,
Dialogue: 0,0:06:49.91,0:06:52.27,Default,,0000,0000,0000,,even by the third page of Google results:
Dialogue: 0,0:06:52.30,0:06:53.73,Default,,0000,0000,0000,,"Outlook is bleak."
Dialogue: 0,0:06:54.35,0:06:56.33,Default,,0000,0000,0000,,"Prognosis is grim."
Dialogue: 0,0:06:56.94,0:06:59.04,Default,,0000,0000,0000,,And I'm thinking, "What the heck?"
Dialogue: 0,0:06:59.06,0:07:00.79,Default,,0000,0000,0000,,I didn't feel sick at all.
Dialogue: 0,0:07:00.82,0:07:03.00,Default,,0000,0000,0000,,I mean, I'd been getting\Ntired in the evening,
Dialogue: 0,0:07:03.03,0:07:05.04,Default,,0000,0000,0000,,but I was 56 years old, you know?
Dialogue: 0,0:07:05.07,0:07:06.73,Default,,0000,0000,0000,,I was slowly losing weight,
Dialogue: 0,0:07:06.75,0:07:10.64,Default,,0000,0000,0000,,but for me, that was what\Nthe doctor told me to do.
Dialogue: 0,0:07:10.100,0:07:12.67,Default,,0000,0000,0000,,It was really something.
Dialogue: 0,0:07:12.69,0:07:15.87,Default,,0000,0000,0000,,And this is the diagram\Nof stage 4 kidney cancer
Dialogue: 0,0:07:15.90,0:07:17.66,Default,,0000,0000,0000,,from the drug I eventually got.
Dialogue: 0,0:07:17.68,0:07:20.24,Default,,0000,0000,0000,,Totally by coincidence,\Nthere's that thing in my lung.
Dialogue: 0,0:07:20.75,0:07:23.73,Default,,0000,0000,0000,,In the left femur, the left thigh bone,\Nthere's another one.
Dialogue: 0,0:07:23.75,0:07:26.12,Default,,0000,0000,0000,,I had one. My leg eventually snapped.
Dialogue: 0,0:07:26.14,0:07:29.06,Default,,0000,0000,0000,,I fainted and landed on it, and it broke.
Dialogue: 0,0:07:29.08,0:07:30.33,Default,,0000,0000,0000,,There's one in the skull,
Dialogue: 0,0:07:30.36,0:07:32.82,Default,,0000,0000,0000,,and then for good measure,\NI had these other tumors,
Dialogue: 0,0:07:32.84,0:07:34.92,Default,,0000,0000,0000,,including, by the time\Nmy treatment started,
Dialogue: 0,0:07:34.94,0:07:36.53,Default,,0000,0000,0000,,one was growing out of my tongue.
Dialogue: 0,0:07:36.55,0:07:38.70,Default,,0000,0000,0000,,I had kidney cancer\Ngrowing out of my tongue.
Dialogue: 0,0:07:38.72,0:07:39.88,Default,,0000,0000,0000,,And what I read
Dialogue: 0,0:07:39.90,0:07:42.29,Default,,0000,0000,0000,,was that my median survival was 24 weeks.
Dialogue: 0,0:07:43.16,0:07:44.62,Default,,0000,0000,0000,,This was bad.
Dialogue: 0,0:07:44.64,0:07:46.44,Default,,0000,0000,0000,,I was facing the grave.
Dialogue: 0,0:07:47.04,0:07:49.62,Default,,0000,0000,0000,,I thought, "What's my mother's face\Ngoing to look like
Dialogue: 0,0:07:49.64,0:07:50.95,Default,,0000,0000,0000,,on the day of my funeral?"
Dialogue: 0,0:07:51.34,0:07:56.83,Default,,0000,0000,0000,,I had to sit down with my daughter\Nand say, "Here's the situation."
Dialogue: 0,0:07:56.85,0:07:58.27,Default,,0000,0000,0000,,Her boyfriend was with her.
Dialogue: 0,0:07:58.29,0:08:01.09,Default,,0000,0000,0000,,I said, "I don't want you guys\Nto get married prematurely,
Dialogue: 0,0:08:01.12,0:08:03.90,Default,,0000,0000,0000,,just so you can do it\Nwhile Dad's still alive."
Dialogue: 0,0:08:05.08,0:08:06.65,Default,,0000,0000,0000,,It's really serious.
Dialogue: 0,0:08:06.67,0:08:10.25,Default,,0000,0000,0000,,If you wonder why patients\Nare motivated and want to help,
Dialogue: 0,0:08:10.28,0:08:11.43,Default,,0000,0000,0000,,think about this.
Dialogue: 0,0:08:11.46,0:08:15.49,Default,,0000,0000,0000,,Well, my doctor prescribed\Na patient community, ACOR.org,
Dialogue: 0,0:08:15.51,0:08:18.73,Default,,0000,0000,0000,,a network of cancer patients,\Nof all amazing things.
Dialogue: 0,0:08:18.75,0:08:20.73,Default,,0000,0000,0000,,Very quickly they told me,
Dialogue: 0,0:08:20.75,0:08:22.73,Default,,0000,0000,0000,,"Kidney cancer is an uncommon disease.
Dialogue: 0,0:08:22.75,0:08:24.73,Default,,0000,0000,0000,,Get yourself to a specialist center.
Dialogue: 0,0:08:24.75,0:08:27.75,Default,,0000,0000,0000,,There is no cure, but there's something\Nthat sometimes works --
Dialogue: 0,0:08:27.77,0:08:29.33,Default,,0000,0000,0000,,it usually doesn't --
Dialogue: 0,0:08:29.35,0:08:31.17,Default,,0000,0000,0000,,called high-dosage interleukin.
Dialogue: 0,0:08:31.19,0:08:33.20,Default,,0000,0000,0000,,Most hospitals don't offer it,
Dialogue: 0,0:08:33.22,0:08:35.40,Default,,0000,0000,0000,,so they won't even tell you it exists.
Dialogue: 0,0:08:35.42,0:08:37.54,Default,,0000,0000,0000,,Don't let them give you\Nanything else first.
Dialogue: 0,0:08:37.57,0:08:40.94,Default,,0000,0000,0000,,And by the way, here are four doctors\Nin your part of the United States
Dialogue: 0,0:08:40.96,0:08:42.91,Default,,0000,0000,0000,,who offer it, and their phone numbers."
Dialogue: 0,0:08:42.94,0:08:45.38,Default,,0000,0000,0000,,How amazing is that?
Dialogue: 0,0:08:45.40,0:08:48.21,Default,,0000,0000,0000,,(Applause)
Dialogue: 0,0:08:48.24,0:08:49.43,Default,,0000,0000,0000,,Here's the thing:
Dialogue: 0,0:08:49.46,0:08:51.05,Default,,0000,0000,0000,,Here we are, four years later --
Dialogue: 0,0:08:51.07,0:08:54.65,Default,,0000,0000,0000,,you can't find a website\Nthat gives patients that information.
Dialogue: 0,0:08:54.67,0:08:57.20,Default,,0000,0000,0000,,Government-approved,\NAmerican Cancer Society,
Dialogue: 0,0:08:57.23,0:09:00.20,Default,,0000,0000,0000,,but patients know\Nwhat patients want to know.
Dialogue: 0,0:09:00.83,0:09:03.60,Default,,0000,0000,0000,,It's the power of patient networks.
Dialogue: 0,0:09:03.63,0:09:06.86,Default,,0000,0000,0000,,This amazing substance --\Nagain, I mentioned:
Dialogue: 0,0:09:06.88,0:09:08.24,Default,,0000,0000,0000,,Where does my body end?
Dialogue: 0,0:09:08.26,0:09:10.65,Default,,0000,0000,0000,,My oncologist and I talk a lot these days
Dialogue: 0,0:09:10.68,0:09:13.18,Default,,0000,0000,0000,,because I try to keep my talks\Ntechnically accurate.
Dialogue: 0,0:09:13.20,0:09:17.53,Default,,0000,0000,0000,,And he said, "You know, the immune\Nsystem is good at detecting invaders,
Dialogue: 0,0:09:18.28,0:09:20.59,Default,,0000,0000,0000,,bacteria coming from outside,
Dialogue: 0,0:09:20.62,0:09:23.09,Default,,0000,0000,0000,,but when it's your own tissue\Nthat you've grown,
Dialogue: 0,0:09:23.12,0:09:24.64,Default,,0000,0000,0000,,it's a whole different thing."
Dialogue: 0,0:09:24.66,0:09:27.62,Default,,0000,0000,0000,,And I went through\Na mental exercise, actually,
Dialogue: 0,0:09:27.64,0:09:32.46,Default,,0000,0000,0000,,because I started a patient support\Ncommunity of my own on a website,
Dialogue: 0,0:09:32.48,0:09:35.52,Default,,0000,0000,0000,,and one of my friends --\None of my relatives, actually -- said,
Dialogue: 0,0:09:35.54,0:09:37.29,Default,,0000,0000,0000,,"Look, Dave, who grew this thing?
Dialogue: 0,0:09:38.89,0:09:42.92,Default,,0000,0000,0000,,Are you going to set yourself up\Nas mentally attacking yourself?"
Dialogue: 0,0:09:42.94,0:09:44.54,Default,,0000,0000,0000,,So we went into it.
Dialogue: 0,0:09:44.57,0:09:47.29,Default,,0000,0000,0000,,The story of how all that\Nhappened is in the book.
Dialogue: 0,0:09:47.31,0:09:49.73,Default,,0000,0000,0000,,Anyway, this is the way\Nthe numbers unfolded.
Dialogue: 0,0:09:49.76,0:09:52.89,Default,,0000,0000,0000,,Me being me, I put the numbers\Nfrom my hospital's website,
Dialogue: 0,0:09:52.91,0:09:54.07,Default,,0000,0000,0000,,for my tumor sizes,
Dialogue: 0,0:09:54.10,0:09:55.25,Default,,0000,0000,0000,,into a spreadsheet.
Dialogue: 0,0:09:55.27,0:09:56.73,Default,,0000,0000,0000,,Don't worry about the numbers.
Dialogue: 0,0:09:56.75,0:09:58.50,Default,,0000,0000,0000,,You see, that's the immune system.
Dialogue: 0,0:09:58.53,0:10:00.50,Default,,0000,0000,0000,,Amazing thing, those two yellow lines
Dialogue: 0,0:10:00.53,0:10:04.73,Default,,0000,0000,0000,,are where I got the two doses\Nof interleukin two months apart.
Dialogue: 0,0:10:04.75,0:10:07.88,Default,,0000,0000,0000,,And look at how the tumor sizes\Nplummeted in between.
Dialogue: 0,0:10:07.90,0:10:09.36,Default,,0000,0000,0000,,Just incredible.
Dialogue: 0,0:10:09.39,0:10:12.82,Default,,0000,0000,0000,,Who knows what we'll be able to do\Nwhen we learn to make more use of it?
Dialogue: 0,0:10:12.84,0:10:15.16,Default,,0000,0000,0000,,The punch line is that a year\Nand a half later,
Dialogue: 0,0:10:15.18,0:10:19.48,Default,,0000,0000,0000,,I was there when this magnificent\Nyoung woman, my daughter,
Dialogue: 0,0:10:19.50,0:10:20.67,Default,,0000,0000,0000,,got married.
Dialogue: 0,0:10:20.69,0:10:22.50,Default,,0000,0000,0000,,And when she came down those steps,
Dialogue: 0,0:10:23.09,0:10:25.32,Default,,0000,0000,0000,,and it was just her and me\Nfor that moment,
Dialogue: 0,0:10:25.34,0:10:28.57,Default,,0000,0000,0000,,I was so glad that she didn't have\Nto say to her mother,
Dialogue: 0,0:10:28.59,0:10:30.65,Default,,0000,0000,0000,,"I wish Dad could have been here."
Dialogue: 0,0:10:30.67,0:10:34.55,Default,,0000,0000,0000,,And this is what we're doing\Nwhen we make health care better.
Dialogue: 0,0:10:34.58,0:10:37.48,Default,,0000,0000,0000,,Now, I want to talk briefly\Nabout a couple of other patients
Dialogue: 0,0:10:37.50,0:10:40.51,Default,,0000,0000,0000,,who are doing everything\Nin their power to improve health care.
Dialogue: 0,0:10:40.54,0:10:42.17,Default,,0000,0000,0000,,This is Regina Holliday,
Dialogue: 0,0:10:42.20,0:10:46.40,Default,,0000,0000,0000,,a painter in Washington DC,\Nwhose husband died of kidney cancer
Dialogue: 0,0:10:46.42,0:10:47.92,Default,,0000,0000,0000,,a year after my disease.
Dialogue: 0,0:10:47.94,0:10:49.73,Default,,0000,0000,0000,,She's painting, here, a mural
Dialogue: 0,0:10:49.75,0:10:52.73,Default,,0000,0000,0000,,of his horrible\Nfinal weeks in the hospital.
Dialogue: 0,0:10:52.75,0:10:55.20,Default,,0000,0000,0000,,One of the things that she discovered
Dialogue: 0,0:10:55.22,0:10:59.50,Default,,0000,0000,0000,,was that her husband's medical record\Nin this paper folder
Dialogue: 0,0:10:59.53,0:11:01.06,Default,,0000,0000,0000,,was just disorganized.
Dialogue: 0,0:11:01.08,0:11:04.34,Default,,0000,0000,0000,,And she thought, "You know,\Nif I have a nutrition facts label
Dialogue: 0,0:11:04.37,0:11:06.09,Default,,0000,0000,0000,,on the side of a cereal box,
Dialogue: 0,0:11:06.12,0:11:08.07,Default,,0000,0000,0000,,why can't there be something that simple
Dialogue: 0,0:11:08.09,0:11:10.64,Default,,0000,0000,0000,,telling every new nurse who comes on duty,
Dialogue: 0,0:11:10.66,0:11:11.89,Default,,0000,0000,0000,,every new doctor,
Dialogue: 0,0:11:11.91,0:11:14.02,Default,,0000,0000,0000,,the basics about my husband's condition?"
Dialogue: 0,0:11:14.04,0:11:19.32,Default,,0000,0000,0000,,So she painted this medical facts mural\Nwith a nutrition label,
Dialogue: 0,0:11:19.34,0:11:20.50,Default,,0000,0000,0000,,something like that,
Dialogue: 0,0:11:20.53,0:11:21.73,Default,,0000,0000,0000,,in a diagram of him.
Dialogue: 0,0:11:21.75,0:11:24.73,Default,,0000,0000,0000,,She then, last year, painted this diagram.
Dialogue: 0,0:11:24.75,0:11:26.63,Default,,0000,0000,0000,,She studied health care like me.
Dialogue: 0,0:11:26.66,0:11:29.09,Default,,0000,0000,0000,,She came to realize\Nthere were a lot of people
Dialogue: 0,0:11:29.12,0:11:31.13,Default,,0000,0000,0000,,who'd written patient-advocate books
Dialogue: 0,0:11:31.15,0:11:33.100,Default,,0000,0000,0000,,that you just don't hear\Nabout at medical conferences.
Dialogue: 0,0:11:34.02,0:11:36.77,Default,,0000,0000,0000,,Patients are such\Nan underutilized resource.
Dialogue: 0,0:11:37.68,0:11:39.40,Default,,0000,0000,0000,,Well, as it said in my introduction,
Dialogue: 0,0:11:39.43,0:11:41.21,Default,,0000,0000,0000,,I've gotten somewhat known for saying
Dialogue: 0,0:11:41.23,0:11:43.44,Default,,0000,0000,0000,,that patients should have\Naccess to their data.
Dialogue: 0,0:11:43.46,0:11:46.14,Default,,0000,0000,0000,,I actually said at one conference\Na couple of years ago,
Dialogue: 0,0:11:46.16,0:11:47.33,Default,,0000,0000,0000,,"Give me my damn data,
Dialogue: 0,0:11:47.35,0:11:49.96,Default,,0000,0000,0000,,because you people\Ncan't be trusted to keep it clean."
Dialogue: 0,0:11:49.98,0:11:52.73,Default,,0000,0000,0000,,And here, she has our "damned" data --
Dialogue: 0,0:11:52.75,0:11:54.04,Default,,0000,0000,0000,,it's a pun --
Dialogue: 0,0:11:54.07,0:11:56.100,Default,,0000,0000,0000,,which is starting to break out,\Nstarting to break through --
Dialogue: 0,0:11:57.02,0:11:59.12,Default,,0000,0000,0000,,the water symbolizes our data.
Dialogue: 0,0:11:59.14,0:12:00.29,Default,,0000,0000,0000,,And in fact,
Dialogue: 0,0:12:00.32,0:12:03.02,Default,,0000,0000,0000,,I want to do a little something\Nimprovisational for you.
Dialogue: 0,0:12:03.04,0:12:06.91,Default,,0000,0000,0000,,There's a guy on Twitter that I know,\Na health IT guy outside Boston,
Dialogue: 0,0:12:06.94,0:12:09.47,Default,,0000,0000,0000,,and he wrote the e-Patient rap.
Dialogue: 0,0:12:09.49,0:12:11.19,Default,,0000,0000,0000,,And it goes like this.
Dialogue: 0,0:12:11.21,0:12:12.83,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:12:12.86,0:12:16.92,Default,,0000,0000,0000,,(Beatboxing)
Dialogue: 0,0:12:16.94,0:12:18.96,Default,,0000,0000,0000,,(Rapping) Gimme my damn data
Dialogue: 0,0:12:18.99,0:12:21.46,Default,,0000,0000,0000,,I wanna be an e-Patient just like Dave
Dialogue: 0,0:12:21.48,0:12:24.02,Default,,0000,0000,0000,,Gimme my damn data,\N'cause it's my life to save
Dialogue: 0,0:12:24.04,0:12:26.62,Default,,0000,0000,0000,,(Normal voice) Now, I'm not going\Nto go any further --
Dialogue: 0,0:12:26.64,0:12:33.17,Default,,0000,0000,0000,,(Applause) (Cheering)
Dialogue: 0,0:12:41.00,0:12:43.41,Default,,0000,0000,0000,,Well, thank you. That shot the timing.
Dialogue: 0,0:12:43.43,0:12:45.08,Default,,0000,0000,0000,,(Laughter)
Dialogue: 0,0:12:45.10,0:12:46.57,Default,,0000,0000,0000,,Think about the possibility.
Dialogue: 0,0:12:46.59,0:12:50.98,Default,,0000,0000,0000,,Why is it that iPhones and iPads\Nadvance far faster
Dialogue: 0,0:12:51.00,0:12:53.24,Default,,0000,0000,0000,,than the health tools\Nthat are available to you
Dialogue: 0,0:12:53.27,0:12:55.50,Default,,0000,0000,0000,,to help take care of your family?
Dialogue: 0,0:12:55.52,0:12:59.64,Default,,0000,0000,0000,,Here's a website, VisibleBody.com,\Nthat I stumbled across.
Dialogue: 0,0:12:59.66,0:13:02.60,Default,,0000,0000,0000,,And I thought, "You know,\NI wonder what my psoas muscle is?"
Dialogue: 0,0:13:02.62,0:13:04.60,Default,,0000,0000,0000,,So you can click on things and remove it.
Dialogue: 0,0:13:04.62,0:13:07.60,Default,,0000,0000,0000,,And I saw, "Aha! That's the kidney\Nand the psoas muscle."
Dialogue: 0,0:13:07.62,0:13:11.58,Default,,0000,0000,0000,,I was rotating it in 3D\Nand saying, "I understand now."
Dialogue: 0,0:13:11.61,0:13:14.54,Default,,0000,0000,0000,,And then I realized\Nit reminded me of Google Earth,
Dialogue: 0,0:13:14.57,0:13:16.88,Default,,0000,0000,0000,,where you can fly to any address.
Dialogue: 0,0:13:17.34,0:13:22.67,Default,,0000,0000,0000,,And I thought, "Why not take this\Nand connect it to my digital scan data
Dialogue: 0,0:13:22.70,0:13:24.98,Default,,0000,0000,0000,,and have Google Earth for my body?"
Dialogue: 0,0:13:25.61,0:13:27.73,Default,,0000,0000,0000,,What did Google come out with this year?
Dialogue: 0,0:13:27.75,0:13:29.75,Default,,0000,0000,0000,,Now there's Google Body browser.
Dialogue: 0,0:13:30.36,0:13:32.34,Default,,0000,0000,0000,,But you see, it's still generic.
Dialogue: 0,0:13:32.36,0:13:34.24,Default,,0000,0000,0000,,It's not my data.
Dialogue: 0,0:13:34.26,0:13:37.34,Default,,0000,0000,0000,,But if we can get that data\Nout from behind the dam
Dialogue: 0,0:13:37.36,0:13:40.34,Default,,0000,0000,0000,,so software innovators can pounce on it
Dialogue: 0,0:13:40.36,0:13:42.64,Default,,0000,0000,0000,,the way software innovators like to do,
Dialogue: 0,0:13:42.66,0:13:44.85,Default,,0000,0000,0000,,who knows what we'll be able\Nto come up with.
Dialogue: 0,0:13:44.87,0:13:46.02,Default,,0000,0000,0000,,One final story.
Dialogue: 0,0:13:46.05,0:13:50.62,Default,,0000,0000,0000,,This is Kelly Young, a rheumatoid\Narthritis patient from Florida.
Dialogue: 0,0:13:50.100,0:13:54.52,Default,,0000,0000,0000,,This is a live story,\Nunfolding just in the last few weeks.
Dialogue: 0,0:13:54.54,0:14:00.08,Default,,0000,0000,0000,,RA patients, as they call themselves --\Nher blog is "RA Warrior" --
Dialogue: 0,0:14:00.11,0:14:01.47,Default,,0000,0000,0000,,have a big problem,
Dialogue: 0,0:14:01.49,0:14:04.27,Default,,0000,0000,0000,,because 40 percent of them\Nhave no visible symptoms.
Dialogue: 0,0:14:04.75,0:14:07.81,Default,,0000,0000,0000,,And that makes it really hard\Nto tell how the disease is going,
Dialogue: 0,0:14:07.83,0:14:10.99,Default,,0000,0000,0000,,and some doctors think,\N"Yeah right, you're really in pain."
Dialogue: 0,0:14:11.01,0:14:13.73,Default,,0000,0000,0000,,Well, she found,\Nthrough her online research,
Dialogue: 0,0:14:13.75,0:14:17.14,Default,,0000,0000,0000,,a nuclear bone scan\Nthat's usually used for cancer,
Dialogue: 0,0:14:17.16,0:14:19.95,Default,,0000,0000,0000,,but it can also reveal inflammation.
Dialogue: 0,0:14:19.98,0:14:23.88,Default,,0000,0000,0000,,And she saw that\Nif there is no inflammation,
Dialogue: 0,0:14:23.91,0:14:26.37,Default,,0000,0000,0000,,then the scan is a uniform gray.
Dialogue: 0,0:14:26.39,0:14:27.59,Default,,0000,0000,0000,,So she took it.
Dialogue: 0,0:14:27.61,0:14:31.89,Default,,0000,0000,0000,,And the radiologist's report\Nsaid, "No cancer found."
Dialogue: 0,0:14:31.92,0:14:34.40,Default,,0000,0000,0000,,Well, that's not what\Nhe was supposed to do with it.
Dialogue: 0,0:14:34.42,0:14:36.84,Default,,0000,0000,0000,,So she wanted to have it read again,
Dialogue: 0,0:14:36.86,0:14:38.73,Default,,0000,0000,0000,,and her doctor fired her.
Dialogue: 0,0:14:38.75,0:14:40.63,Default,,0000,0000,0000,,She pulled up the CD.
Dialogue: 0,0:14:40.66,0:14:44.36,Default,,0000,0000,0000,,He said, "If you don't want to follow\Nmy instructions, go away."
Dialogue: 0,0:14:44.96,0:14:47.73,Default,,0000,0000,0000,,So she pulled up the CD\Nof the scan images,
Dialogue: 0,0:14:47.75,0:14:49.73,Default,,0000,0000,0000,,and look at all those hot spots.
Dialogue: 0,0:14:49.75,0:14:52.73,Default,,0000,0000,0000,,And she's now actively engaged on her blog
Dialogue: 0,0:14:52.75,0:14:55.54,Default,,0000,0000,0000,,in looking for assistance\Nin getting better care.
Dialogue: 0,0:14:56.06,0:14:58.85,Default,,0000,0000,0000,,See, that is an empowered\Npatient -- no medical training.
Dialogue: 0,0:14:58.88,0:15:00.85,Default,,0000,0000,0000,,We are, you are,
Dialogue: 0,0:15:00.87,0:15:03.57,Default,,0000,0000,0000,,the most underused\Nresource in health care.
Dialogue: 0,0:15:03.59,0:15:05.11,Default,,0000,0000,0000,,What she was able to do
Dialogue: 0,0:15:05.13,0:15:07.87,Default,,0000,0000,0000,,was because she had access\Nto the raw data.
Dialogue: 0,0:15:07.90,0:15:09.27,Default,,0000,0000,0000,,How big a deal was this?
Dialogue: 0,0:15:09.29,0:15:11.04,Default,,0000,0000,0000,,Well at TED2009,
Dialogue: 0,0:15:11.06,0:15:14.34,Default,,0000,0000,0000,,Tim Berners-Lee himself,\Ninventor of the Web,
Dialogue: 0,0:15:14.36,0:15:17.34,Default,,0000,0000,0000,,gave a talk where he said\Nthe next big thing
Dialogue: 0,0:15:17.36,0:15:22.04,Default,,0000,0000,0000,,is not to have your browser find\Nother people's articles about the data,
Dialogue: 0,0:15:22.06,0:15:23.24,Default,,0000,0000,0000,,but the raw data.
Dialogue: 0,0:15:23.27,0:15:26.04,Default,,0000,0000,0000,,And he got them chanting\Nby the end of the talk,
Dialogue: 0,0:15:26.06,0:15:29.73,Default,,0000,0000,0000,,"Raw data now! Raw data now!"
Dialogue: 0,0:15:29.75,0:15:31.26,Default,,0000,0000,0000,,And I ask you,
Dialogue: 0,0:15:31.29,0:15:34.00,Default,,0000,0000,0000,,three words, please,\Nto improve health care:
Dialogue: 0,0:15:34.57,0:15:36.54,Default,,0000,0000,0000,,Let patients help!
Dialogue: 0,0:15:36.57,0:15:38.28,Default,,0000,0000,0000,,Let patients help!
Dialogue: 0,0:15:38.31,0:15:40.16,Default,,0000,0000,0000,,Let patients help!
Dialogue: 0,0:15:40.18,0:15:42.10,Default,,0000,0000,0000,,Let patients help!
Dialogue: 0,0:15:42.13,0:15:43.39,Default,,0000,0000,0000,,Thank you.
Dialogue: 0,0:15:43.42,0:15:50.18,Default,,0000,0000,0000,,(Applause)
Dialogue: 0,0:16:00.16,0:16:05.55,Default,,0000,0000,0000,,For all the patients around the world\Nwatching this on the Webcast,
Dialogue: 0,0:16:05.57,0:16:07.89,Default,,0000,0000,0000,,God bless you, everyone.\NLet patients help.
Dialogue: 0,0:16:07.92,0:16:10.56,Default,,0000,0000,0000,,Host: And bless yourself.\NThank you very much.