Meet e-Patient Dave
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0:00 - 0:03It's an amazing thing that we're here to talk
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0:03 - 0:06about the year of patients rising.
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0:06 - 0:08You heard stories earlier today
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0:08 - 0:11about patients who are taking control of their cases,
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0:11 - 0:14patients who are saying, "You know what, I know what the odds are,
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0:14 - 0:16but I'm going to go look for more information.
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0:16 - 0:18I'm going to define
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0:18 - 0:20what the terms of my success are."
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0:20 - 0:22I'm going to be sharing with you
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0:22 - 0:24how four years ago I almost died --
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0:24 - 0:26found out I was, in fact,
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0:26 - 0:28already almost dead.
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0:28 - 0:31And what I then found out about what's called the e-Patient movement --
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0:31 - 0:33I'll explain what that term means.
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0:33 - 0:36I had been blogging under the name Patient Dave,
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0:36 - 0:38and when I discovered this,
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0:38 - 0:40I just renamed myself e-Patient Dave.
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0:40 - 0:42Regarding the word "patient,"
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0:42 - 0:44when I first started a few years ago
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0:44 - 0:46getting involved in health care
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0:46 - 0:48and attending meetings as just a casual observer,
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0:48 - 0:50I noticed that people would talk about patients
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0:50 - 0:53as if it was somebody who's not in the room here,
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0:53 - 0:55somebody out there.
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0:55 - 0:57Some of our talks today, we still act like that.
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0:57 - 0:59But I'm here to tell you,
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0:59 - 1:02"patient" is not a third-person word.
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1:03 - 1:05You, yourself,
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1:05 - 1:07will find yourself in a hospital bed --
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1:07 - 1:09or your mother, your child --
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1:09 - 1:12there are heads nodding, people who say, "Yes, I know exactly what you mean."
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1:12 - 1:15So when you hear what I'm going to talk about here today,
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1:15 - 1:17first of all, I want to say
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1:17 - 1:19that I am here on behalf
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1:19 - 1:21of all the patients that I have ever met,
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1:21 - 1:23all the ones I haven't met.
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1:23 - 1:26This is about letting patients play a more active role
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1:26 - 1:29in helping health care, in fixing health care.
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1:29 - 1:31One of the senior doctors at my hospital,
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1:31 - 1:34Charlie Safran, and his colleague, Warner Slack,
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1:34 - 1:36have been saying for decades
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1:36 - 1:39that the most underutilized resource in all of health care
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1:39 - 1:41is the patient.
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1:41 - 1:44They have been saying that since the 1970s.
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1:44 - 1:46Now I'm going to step back in history.
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1:46 - 1:48This is from July, 1969.
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1:48 - 1:50I was a freshman in college,
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1:50 - 1:52and this was when we first landed on the Moon.
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1:52 - 1:54And it was the first time
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1:54 - 1:56we had ever seen from another surface --
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1:56 - 1:58that's the place where you and I are right now,
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1:58 - 2:00where we live.
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2:00 - 2:02The world was changing.
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2:02 - 2:05It was about to change in ways that nobody could foresee.
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2:05 - 2:07A few weeks later,
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2:07 - 2:09Woodstock happened.
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2:09 - 2:11Three days of fun and music.
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2:11 - 2:13Here, just for historical authenticity,
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2:13 - 2:15is a picture of me in that year.
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2:15 - 2:18(Laughter)
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2:18 - 2:20Yeah, the wavy hair, the blue eyes --
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2:20 - 2:22it was really something.
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2:22 - 2:24That Fall of 1969,
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2:24 - 2:26the Whole Earth Catalog came out.
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2:26 - 2:29It was a hippie journal of self-sufficiency.
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2:29 - 2:32We think of hippies of being just hedonists,
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2:32 - 2:35but there's a very strong component -- I was in that movement --
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2:35 - 2:37a very strong component
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2:37 - 2:39of being responsible for yourself.
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2:39 - 2:41This book's title's subtitle
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2:41 - 2:43is: "Access to Tools."
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2:43 - 2:45And it talked about how to build your own house,
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2:45 - 2:47how to grow your own food, all kinds of things.
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2:47 - 2:49In the 1980s,
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2:49 - 2:51this young doctor, Tom Ferguson,
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2:51 - 2:54was the medical editor of the Whole Earth Catalog.
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2:54 - 2:56And he saw that the great majority
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2:56 - 2:58of what we do in medicine and health care
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2:58 - 3:00is taking care of ourselves.
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3:00 - 3:03In fact, he said it was 70 to 80 percent
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3:03 - 3:05of how we actually take care of our bodies.
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3:05 - 3:07Well he also saw
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3:07 - 3:10that when health care turns to medical care
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3:10 - 3:12because of a more serious disease,
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3:12 - 3:15the key thing that holds us back is access to information.
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3:15 - 3:18And when the Web came along, that changed everything,
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3:18 - 3:21because not only could we find information,
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3:21 - 3:24we could find other people like ourselves
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3:24 - 3:26who could gather, who could bring us information.
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3:26 - 3:29And he coined this term e-Patients --
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3:29 - 3:32equipped, engaged, empowered, enabled.
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3:32 - 3:34Obviously at this stage of life
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3:34 - 3:37he was in a somewhat more dignified form than he was back then.
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3:37 - 3:39Now I was an engaged patient
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3:39 - 3:41long before I ever heard of the term.
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3:41 - 3:44In 2006, I went to my doctor for a regular physical,
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3:44 - 3:46and I had said, "I have a sore shoulder."
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3:46 - 3:48Well, I got an X-ray,
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3:48 - 3:50and the next morning --
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3:50 - 3:52you may have noticed, those of you who have been through a medical crisis
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3:52 - 3:54will understand this.
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3:54 - 3:56This morning, some of the speakers
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3:56 - 4:00named the date when they found out about their condition.
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4:00 - 4:03For me, it was 9:00 AM
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4:03 - 4:05on January 3, 2007.
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4:05 - 4:07I was at the office; my desk was clean;
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4:07 - 4:11I had the blue partition carpet on the walls.
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4:11 - 4:14The phone rang and it was my doctor.
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4:14 - 4:17He said, "Dave, I pulled up the X-ray image
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4:17 - 4:19on the screen on the computer at home."
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4:19 - 4:21He said, "Your shoulder's going to be fine,
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4:21 - 4:23but Dave, there's something in your lung."
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4:23 - 4:25And if you look in that red oval,
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4:25 - 4:28that shadow was not supposed to be there.
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4:29 - 4:31To make a long story short,
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4:31 - 4:33I said, "So you need me to get back in there?"
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4:33 - 4:36He said, "Yeah, we're going to need to do a CT scan of your chest."
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4:36 - 4:39And in parting I said, "Is there anything I should do?"
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4:39 - 4:41He said -- think about this one.
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4:41 - 4:43This is the advice your doctor gives you:
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4:43 - 4:46"just go home and have a glass of wine with your wife."
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4:48 - 4:52I went in for the CAT scan,
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4:52 - 4:55and it turns out there were five of these things in both my lungs.
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4:55 - 4:57So at that point we knew that it was cancer.
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4:57 - 4:59We knew it wasn't lung cancer.
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4:59 - 5:02That meant it was metastasized from somewhere.
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5:02 - 5:05The question was, where from?
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5:05 - 5:07So I went in for an ultrasound.
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5:07 - 5:10I got to do what many women have --
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5:10 - 5:13the jelly on the belly and bzzzz.
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5:13 - 5:15My wife came with me.
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5:15 - 5:17She's a veterinarian,
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5:17 - 5:19so she's seen lots of ultrasounds.
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5:19 - 5:22I mean, she knows I'm not a dog.
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5:22 - 5:25But what we saw -- this is an MRI image.
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5:25 - 5:27This is much sharper than an ultrasound would be.
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5:27 - 5:29What we saw in that kidney
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5:29 - 5:31was that big blob there.
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5:31 - 5:33And there were actually two of these.
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5:33 - 5:35One was growing out the front and it had already erupted,
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5:35 - 5:37and it latched onto the bowel.
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5:37 - 5:40One was growing out the back, and it attached to the soleus muscle,
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5:40 - 5:43which is a big muscle in the back that I'd never heard of,
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5:43 - 5:46but all of a sudden I cared about it.
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5:46 - 5:48I went home.
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5:48 - 5:51Now I've been Googling -- I've been online since 1989 on CompuServe.
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5:51 - 5:53I went home, and I know you can't read the details here;
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5:53 - 5:55that's not important.
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5:55 - 5:57My point is I went to a respected medical website,
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5:57 - 5:59WebMD,
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5:59 - 6:02because I know how to filter out junk.
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6:02 - 6:04I also found my wife online.
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6:04 - 6:06Before I met her,
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6:06 - 6:08I went through some suboptimal search results.
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6:08 - 6:10(Laughter)
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6:10 - 6:13So I looked for quality information.
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6:13 - 6:15There's so much about trust --
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6:15 - 6:17what sources of information can we trust?
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6:17 - 6:20Where does my body end
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6:20 - 6:22and an invader start?
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6:22 - 6:25And cancer, a tumor, is something you grow out of your own tissue.
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6:25 - 6:27How does that happen?
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6:27 - 6:29Where does medical ability
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6:29 - 6:31end and start?
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6:31 - 6:33Well, so what I read on WebMD:
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6:33 - 6:36"The prognosis is poor
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6:36 - 6:38for progressing renal cell cancer.
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6:38 - 6:41Almost all patients are incurable."
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6:41 - 6:43I've been online long enough to know
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6:43 - 6:45if I don't like the first results I get,
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6:45 - 6:47I go look for more.
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6:47 - 6:50And what I found was on other websites,
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6:50 - 6:52even by the third page of Google results,
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6:52 - 6:54"Outlook is bleak",
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6:54 - 6:56"Prognosis is grim."
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6:56 - 6:58And I'm thinking, "What the heck?"
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6:58 - 7:00I didn't feel sick at all.
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7:00 - 7:02I mean, I'd been getting tired in the evening,
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7:02 - 7:04but I was 56 years old.
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7:04 - 7:06I was slowly losing weight,
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7:06 - 7:09but for me, that was what the doctor told me to do.
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7:09 - 7:12It was really something.
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7:12 - 7:15And this is the diagram of stage four kidney cancer
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7:15 - 7:17from the drug I eventually got.
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7:17 - 7:20Totally by coincidence, there's that thing in my lung.
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7:20 - 7:23In the left femur, the left thigh bone, there's another one.
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7:23 - 7:25I had one. My leg eventually snapped.
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7:25 - 7:28I fainted and landed on it, and it broke.
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7:28 - 7:30There's one in the skull,
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7:30 - 7:32and then just for good measure, I had these other tumors --
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7:32 - 7:34including, by the time my treatment started,
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7:34 - 7:36one was growing out of my tongue.
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7:36 - 7:38I had kidney cancer growing out of my tongue.
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7:38 - 7:40And what I read was that my median survival
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7:40 - 7:42was 24 weeks.
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7:42 - 7:44This was bad.
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7:44 - 7:47I was facing the grave.
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7:47 - 7:49I thought, "What's my mother's face going to look like
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7:49 - 7:51on the day of my funeral?"
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7:51 - 7:53I had to sit down with my daughter
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7:53 - 7:56and say, "Here's the situation."
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7:56 - 7:58Her boyfriend was with her.
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7:58 - 8:01I said, "I don't want you guys to get married prematurely
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8:01 - 8:04just so you can do it while Dad's still alive."
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8:04 - 8:06It's really serious.
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8:06 - 8:09Because if you wonder why patients are motivated and want to help,
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8:09 - 8:11think about this.
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8:11 - 8:13Well, my doctor prescribed a patient community,
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8:13 - 8:15Acor.org,
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8:15 - 8:18a network of cancer patients, of all amazing things.
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8:18 - 8:20Very quickly they told me,
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8:20 - 8:22"Kidney cancer is an uncommon disease.
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8:22 - 8:24Get yourself to a specialist center.
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8:24 - 8:27There is no cure, but there's something that sometimes works --
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8:27 - 8:29it usually doesn't --
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8:29 - 8:31called high-dosage interleukin.
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8:31 - 8:33Most hospitals don't offer it,
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8:33 - 8:35so they won't even tell you it exists.
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8:35 - 8:37And don't let them give you anything else first.
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8:37 - 8:39And by the way, here are four doctors
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8:39 - 8:42in your part of the United States who offer it and their phone numbers."
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8:42 - 8:44How amazing is that?
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8:44 - 8:47(Applause)
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8:47 - 8:49Here's the thing.
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8:49 - 8:51Here we are, four years later:
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8:51 - 8:54you can't find a website that gives patients that information.
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8:54 - 8:57Government-approved, American Cancer Society,
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8:57 - 9:00but patients know what patients want to know.
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9:00 - 9:03It's the power of patient networks.
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9:03 - 9:05This amazing substance --
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9:05 - 9:08again I mentioned, where does my body end?
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9:08 - 9:10My oncologist and I talk a lot these days
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9:10 - 9:12because I try to keep my talks technically accurate.
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9:12 - 9:14And he said, "You know, the immune system
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9:14 - 9:17is good at detecting invaders --
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9:17 - 9:20bacteria coming from outside --
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9:20 - 9:22but when it's your own tissue that you've grown,
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9:22 - 9:24it's a whole different thing."
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9:24 - 9:27And I went through a mental exercise actually,
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9:27 - 9:30because I started a patient support community of my own
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9:30 - 9:32on a website,
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9:32 - 9:34and one of my friends, one of my relatives actually,
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9:34 - 9:38said, "Look, Dave, who grew this thing?
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9:38 - 9:40Are you going to set yourself up
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9:40 - 9:42as mentally attacking yourself?"
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9:42 - 9:44So we went into it.
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9:44 - 9:47And the story of how all that happens is in this book.
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9:47 - 9:49Anyway, this is the way the numbers unfolded.
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9:49 - 9:52Me being me, I put the numbers from my hospital's website
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9:52 - 9:54from my tumor sizes into a spreadsheet.
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9:54 - 9:56Don't worry about the numbers.
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9:56 - 9:58You see, that's the immune system.
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9:58 - 10:00Amazing thing, those two yellow lines
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10:00 - 10:02are where I got the two doses of interleukin
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10:02 - 10:04two months apart.
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10:04 - 10:07And look at how the tumor sizes plummeted in between.
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10:07 - 10:09Just incredible.
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10:09 - 10:12Who knows what we'll be able to do when we learn to make more use of it.
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10:12 - 10:15The punch line is that a year and a half later,
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10:15 - 10:18I was there when this magnificent young woman, my daughter,
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10:18 - 10:20got married.
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10:20 - 10:23And when she came down those steps,
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10:23 - 10:25and it was just her and me for that moment,
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10:25 - 10:28I was so glad that she didn't have to say to her mother,
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10:28 - 10:30"I wish Dad could have been here."
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10:30 - 10:32And this is what we're doing
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10:32 - 10:34when we make health care better.
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10:34 - 10:37Now I want to talk briefly about a couple of other patients
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10:37 - 10:40who are doing everything in their power to improve health care.
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10:40 - 10:42This is Regina Holliday,
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10:42 - 10:44a painter in Washington D.C.,
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10:44 - 10:47whose husband died of kidney cancer a year after my disease.
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10:47 - 10:49She's painting here a mural
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10:49 - 10:52of his horrible final weeks in the hospital.
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10:52 - 10:54One of the things that she discovered
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10:54 - 10:56was that her husband's medical record
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10:56 - 10:58in this paper folder
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10:58 - 11:00was just disorganized.
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11:00 - 11:03And she thought, "You know, if I have a nutrition facts label
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11:03 - 11:05on the side of a cereal box,
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11:05 - 11:07why can't there be something that simple
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11:07 - 11:09telling every new nurse who comes on duty,
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11:09 - 11:11every new doctor,
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11:11 - 11:13the basics about my husband's condition?"
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11:13 - 11:15So she painted this medical facts mural
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11:15 - 11:17with a nutrition label,
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11:17 - 11:19something like that,
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11:19 - 11:21in a diagram of him.
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11:21 - 11:24She then, last year, painted this diagram.
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11:24 - 11:26She studied health care like me.
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11:26 - 11:28She came to realize that there were a lot of people
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11:28 - 11:30who'd written patient advocate books
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11:30 - 11:33that you just don't hear about at medical conferences.
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11:33 - 11:36Patients are such an underutilized resource.
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11:37 - 11:39Well as it says in my introduction,
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11:39 - 11:42I've gotten somewhat known for saying that patients should have access to their data.
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11:42 - 11:45And I actually said at one conference a couple of years ago,
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11:45 - 11:47"Give me my damn data,
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11:47 - 11:50because you people can't be trusted to keep it clean."
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11:50 - 11:52And here she has our damned data --
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11:52 - 11:54it's a pun --
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11:54 - 11:56which is starting to break out, starting to break through --
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11:56 - 11:59the water symbolizes our data.
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11:59 - 12:02And in fact, I want to do a little something improvisational for you here.
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12:02 - 12:04There's a guy on Twitter that I know,
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12:04 - 12:06a health IT guy outside Boston,
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12:06 - 12:09and he wrote the e-Patient rap.
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12:09 - 12:12And it goes like this.
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12:17 - 12:19♫ Gimme my damn data ♫
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12:19 - 12:21♫ I want to be an e-Patient just like Dave ♫
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12:21 - 12:24♫ Gimme my damn data, cuz it's my life to save ♫
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12:24 - 12:26Now I'm not going to go any further.
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12:26 - 12:40(Applause)
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12:40 - 12:43Well thank you. That shot the timing.
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12:43 - 12:45(Laughter)
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12:45 - 12:47Think about the possibility,
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12:47 - 12:49why is it that iPhones and iPads
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12:49 - 12:51advance far faster
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12:51 - 12:53than the health tools that are available to you
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12:53 - 12:55to help take care of your family?
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12:55 - 12:57Here's a website, VisibleBody.com,
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12:57 - 12:59that I stumbled across.
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12:59 - 13:02And I thought, "You know, I wonder what my soleus muscle is?"
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13:02 - 13:04So you can click on things and remove it.
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13:04 - 13:07And I saw, "Aha, that's the kidney and the soleus muscle."
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13:07 - 13:09And I was rotating it in 3D
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13:09 - 13:11and saying, "I understand now."
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13:11 - 13:14And then I realized it reminded me of Google Earth,
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13:14 - 13:17where you can fly to any address.
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13:17 - 13:19And I thought, "Why not take this
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13:19 - 13:22and connect it to my digital scan data
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13:22 - 13:25and have Google Earth for my body?"
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13:25 - 13:27What did Google come out with this year?
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13:27 - 13:30Now there's Google Body browser.
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13:30 - 13:32But you see, it's still generic.
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13:32 - 13:34It's not my data.
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13:34 - 13:37But if we can get that data out from behind the dam
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13:37 - 13:40so software innovators can pounce on it,
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13:40 - 13:42the way software innovators like to do,
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13:42 - 13:44who knows what we'll be able to come up with.
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13:44 - 13:46One final story: this is Kelly Young,
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13:46 - 13:48a rheumatoid arthritis patient
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13:48 - 13:50from Florida.
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13:50 - 13:52This is a live story
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13:52 - 13:54unfolding just in the last few weeks.
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13:54 - 13:57RA patients, as they call themselves --
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13:57 - 13:59her blog is RA Warrior --
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13:59 - 14:01have a big problem
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14:01 - 14:04because 40 percent of them have no visible symptoms.
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14:04 - 14:07And that makes it just really hard to tell how the disease is going.
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14:07 - 14:10And some doctors think, "Yeah right, you're really in pain."
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14:10 - 14:13Well she found, through her online research,
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14:13 - 14:15a nuclear bone scan
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14:15 - 14:17that's usually used for cancer,
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14:17 - 14:19but it can also reveal inflammation.
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14:19 - 14:21And she saw
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14:21 - 14:23that if there is no inflammation
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14:23 - 14:26then the scan is a uniform gray.
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14:26 - 14:28So she took it.
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14:28 - 14:31And the radiologist report said, "No cancer found."
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14:31 - 14:33Well that's not what he was supposed to do with it.
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14:33 - 14:36So she had it read again, she wanted to have it read again,
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14:36 - 14:38and her doctor fired her.
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14:38 - 14:40She pulled up the CD.
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14:40 - 14:42He said, "If you don't want to follow my instructions,
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14:42 - 14:44go away."
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14:44 - 14:47So she pulled up the CD of the scan images,
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14:47 - 14:49and look at all those hot spots.
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14:49 - 14:52And she's now actively engaged on her blog
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14:52 - 14:55in looking for assistance in getting better care.
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14:55 - 14:58See, that is an empowered patient -- no medical training.
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14:58 - 15:00We are, you are,
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15:00 - 15:03the most underused resource in health care.
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15:03 - 15:05What she was able to do
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15:05 - 15:07was because she had access to the raw data.
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15:07 - 15:09How big a deal was this?
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15:09 - 15:11Well at TED2009,
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15:11 - 15:14Tim Berners-Lee himself, inventor of the Web, gave a talk
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15:14 - 15:17where he said the next big thing
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15:17 - 15:19is not to have your browser go out
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15:19 - 15:21and find other people's articles about the data,
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15:21 - 15:23but the raw data.
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15:23 - 15:25And he got them chanting by the end of the talk,
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15:25 - 15:27"Raw data now.
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15:27 - 15:29Raw data now."
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15:29 - 15:31And I ask you,
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15:31 - 15:34three words, please, to improve health care:
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15:34 - 15:36let patients help.
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15:36 - 15:38Let patients help.
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15:38 - 15:40Let patients help.
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15:40 - 15:42Let patients help.
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15:42 - 15:44Thank you.
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15:44 - 16:00(Applause)
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16:00 - 16:03For all the patients around the world
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16:03 - 16:05watching this on the webcast,
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16:05 - 16:07God bless you, everyone -- let patients help.
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16:07 - 16:10Host: And bless yourself. Thank you very much.
- Title:
- Meet e-Patient Dave
- Speaker:
- Dave deBronkart
- Description:
-
When Dave deBronkart learned he had a rare and terminal cancer, he turned to a group of fellow patients online -- and found a medical treatment that even his own doctors didn't know. It saved his life. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
- Video Language:
- English
- Team:
- closed TED
- Project:
- TEDTalks
- Duration:
- 16:10
Krystian Aparta commented on English subtitles for Meet e-Patient Dave | ||
Krystian Aparta edited English subtitles for Meet e-Patient Dave | ||
Krystian Aparta edited English subtitles for Meet e-Patient Dave | ||
TED edited English subtitles for Meet e-Patient Dave | ||
TED added a translation |
Krystian Aparta
The English transcript was updated on 11/16/2016.