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