0:00:01.055,0:00:02.206
It's an amazing thing

0:00:02.230,0:00:06.212
that we're here to talk[br]about the year of patients rising.

0:00:07.006,0:00:08.726
You heard stories earlier today

0:00:08.750,0:00:11.778
about patients who are taking[br]control of their cases,

0:00:11.802,0:00:12.957
patients who are saying,

0:00:12.981,0:00:14.955
"You know what, I know what the odds are,

0:00:14.979,0:00:17.129
but I'm going to look[br]for more information.

0:00:17.153,0:00:20.913
I'm going to define[br]what the terms of my success are."

0:00:20.937,0:00:24.726
I'm going to be sharing with you[br]how, four years ago, I almost died --

0:00:24.750,0:00:27.633
found out I was, in fact,[br]already almost dead --

0:00:27.657,0:00:29.895
and what I then found out

0:00:29.919,0:00:32.121
about what's called[br]the e-Patient movement.

0:00:32.145,0:00:33.794
I'll explain what that term means.

0:00:33.818,0:00:36.586
I had been blogging[br]under the name "Patient Dave,"

0:00:36.610,0:00:37.984
and when I discovered this,

0:00:38.008,0:00:40.306
I just renamed myself e-Patient Dave.

0:00:40.679,0:00:42.382
Regarding the word "patient":

0:00:42.406,0:00:46.342
When I first started a few years ago[br]getting involved in health care

0:00:46.366,0:00:48.726
and attending meetings[br]as just a casual observer,

0:00:48.750,0:00:50.989
I noticed that people[br]would talk about patients

0:00:51.013,0:00:53.588
as if it was somebody[br]who's not in the room here --

0:00:53.612,0:00:55.006
somebody out there.

0:00:55.030,0:00:57.543
Some of our talks today,[br]we still act like that.

0:00:57.567,0:00:59.479
But I'm here to tell you:

0:00:59.503,0:01:02.225
"patient" is not a third-person word.

0:01:02.885,0:01:04.048
All right?

0:01:04.072,0:01:07.292
You yourself will find[br]yourself in a hospital bed --

0:01:07.316,0:01:08.971
or your mother, your child --

0:01:08.995,0:01:10.913
there are heads nodding, people who say,

0:01:10.937,0:01:12.678
"Yes, I know exactly what you mean."

0:01:12.702,0:01:15.726
So when you hear what I'm going[br]to talk about here today,

0:01:15.750,0:01:18.780
first of all, I want to say that I am here

0:01:18.804,0:01:21.384
on behalf of all the patients[br]that I have ever met,

0:01:21.408,0:01:23.111
all the ones I haven't met.

0:01:23.135,0:01:26.908
This is about letting patients[br]play a more active role

0:01:26.932,0:01:29.909
in helping health care,[br]in fixing health care.

0:01:29.933,0:01:31.932
One of the senior doctors at my hospital,

0:01:31.956,0:01:34.530
Charlie Safran,[br]and his colleague, Warner Slack,

0:01:34.554,0:01:36.072
have been saying for decades

0:01:36.096,0:01:39.856
that the most underutilized[br]resource in all of health care

0:01:39.880,0:01:41.055
is the patient.

0:01:41.599,0:01:44.265
They have been saying that[br]since the 1970s.

0:01:44.289,0:01:46.245
Now, I'm going to step back in history.

0:01:46.269,0:01:48.155
This is from July, 1969.

0:01:48.179,0:01:49.841
I was a freshman in college,

0:01:49.865,0:01:52.468
and this was when we first[br]landed on the Moon.

0:01:52.853,0:01:54.284
And it was the first time

0:01:54.308,0:01:57.071
we had ever seen from another surface --

0:01:57.095,0:01:59.339
that's the place[br]where you and I are right now,

0:01:59.363,0:02:00.521
where we live.

0:02:00.545,0:02:02.092
The world was changing.

0:02:02.116,0:02:05.093
It was about to change[br]in ways that nobody could foresee.

0:02:05.117,0:02:08.775
A few weeks later, Woodstock happened.

0:02:09.385,0:02:11.465
Three days of fun and music.

0:02:11.489,0:02:13.589
Here, just for historical authenticity,

0:02:13.613,0:02:15.412
is a picture of me in that year.

0:02:15.436,0:02:18.662
(Laughter)

0:02:18.686,0:02:20.663
Yeah, the wavy hair, the blue eyes --

0:02:20.687,0:02:21.900
it was really something.

0:02:22.350,0:02:24.327
That fall of 1969,

0:02:24.351,0:02:26.238
the Whole Earth Catalog came out.

0:02:26.262,0:02:29.726
It was a hippie journal[br]of self-sufficiency.

0:02:29.750,0:02:32.781
We think of hippies[br]of being just hedonists,

0:02:32.805,0:02:36.006
but there's a very strong component --[br]I was in that movement --

0:02:36.030,0:02:39.374
a very strong component[br]of being responsible for yourself.

0:02:39.398,0:02:43.295
This book's title's subtitle[br]is "Access to Tools."

0:02:43.319,0:02:45.615
It talked about how to build[br]your own house,

0:02:45.639,0:02:48.044
how to grow your own food,[br]all kinds of things.

0:02:48.068,0:02:49.472
In the 1980s,

0:02:49.496,0:02:51.630
this young doctor, Tom Ferguson,

0:02:51.654,0:02:54.281
was the medical editor[br]of the Whole Earth Catalog.

0:02:54.305,0:02:59.076
He saw that the great majority[br]of what we do in medicine and health care

0:02:59.100,0:03:00.575
is taking care of ourselves.

0:03:01.011,0:03:03.362
In fact, he said it was 70 to 80 percent

0:03:03.386,0:03:05.655
of how we actually[br]take care of our bodies.

0:03:05.679,0:03:10.357
Well, he also saw that when health care[br]turns to medical care

0:03:10.381,0:03:12.291
because of a more serious disease,

0:03:12.315,0:03:15.639
the key thing that holds us back[br]is access to information.

0:03:15.663,0:03:18.929
And when the Web came along,[br]that changed everything,

0:03:18.953,0:03:21.546
because not only[br]could we find information,

0:03:21.570,0:03:24.286
we could find other people like ourselves

0:03:24.310,0:03:26.901
who could gather,[br]who could bring us information.

0:03:26.925,0:03:29.440
And he coined this term "e-Patients" --

0:03:29.464,0:03:31.795
equipped, engaged, empowered, enabled.

0:03:31.819,0:03:33.520
Obviously, at this stage of life

0:03:33.544,0:03:37.511
he was in a somewhat more dignified[br]form than he was back then.

0:03:37.535,0:03:41.489
Now, I was an engaged patient[br]long before I ever heard of the term.

0:03:41.513,0:03:44.489
In 2006, I went to my doctor[br]for a regular physical,

0:03:44.513,0:03:46.812
and I had said, "I have a sore shoulder."

0:03:46.836,0:03:48.409
Well, I got an X-ray,

0:03:48.433,0:03:50.081
and the next morning --

0:03:50.105,0:03:53.630
you may have noticed, those of you[br]who have been through a medical crisis

0:03:53.654,0:03:54.854
will understand this.

0:03:54.878,0:03:59.340
This morning, some of the speakers[br]named the date when they found out

0:03:59.364,0:04:00.635
about their condition.

0:04:00.659,0:04:03.072
For me, it was 9am

0:04:03.096,0:04:05.800
on January 3, 2007.

0:04:05.824,0:04:08.319
I was at the office; my desk was clean.

0:04:08.343,0:04:11.650
I had the blue partition[br]carpet on the walls.

0:04:12.087,0:04:14.137
The phone rang and it was my doctor.

0:04:14.907,0:04:17.726
He said, "Dave, I pulled[br]up the X-ray image

0:04:17.750,0:04:19.840
on the screen on the computer at home."

0:04:19.864,0:04:21.931
He said, "Your shoulder[br]is going to be fine,

0:04:21.955,0:04:24.040
but Dave, there's something in your lung."

0:04:24.064,0:04:25.972
And if you look in that red oval,

0:04:25.996,0:04:28.799
that shadow was not supposed to be there.

0:04:29.750,0:04:31.726
To make a long story short,

0:04:31.750,0:04:33.905
I said, "So you need me[br]to get back in there?"

0:04:33.929,0:04:37.180
He said, "Yeah, we're going to need[br]to do a CT scan of your chest."

0:04:37.204,0:04:39.845
In parting, I said,[br]"Is there anything I should do?"

0:04:39.869,0:04:41.726
He said -- think about this one,

0:04:41.750,0:04:43.726
this is the advice your doctor gives you:

0:04:43.750,0:04:46.750
"Just go home and have a glass[br]of wine with your wife."

0:04:49.023,0:04:50.849
I went in for the CAT scan.

0:04:52.218,0:04:55.445
It turns out there were[br]five of these things in both my lungs.

0:04:55.469,0:04:57.631
So at that point we knew[br]that it was cancer.

0:04:57.655,0:04:59.259
We knew it wasn't lung cancer.

0:04:59.718,0:05:02.235
That meant it was metastasized[br]from somewhere.

0:05:03.128,0:05:04.791
The question was, where from?

0:05:05.234,0:05:07.860
So I went in for an ultrasound.

0:05:07.884,0:05:10.377
I got to do what many women have --

0:05:10.401,0:05:13.256
the jelly on the belly and the, "Bzzzz!"

0:05:13.750,0:05:15.388
My wife came with me.

0:05:15.935,0:05:17.540
She's a veterinarian,

0:05:17.564,0:05:19.361
so she's seen lots of ultrasounds.

0:05:19.385,0:05:20.969
I mean, she knows I'm not a dog.

0:05:20.993,0:05:22.637
(Laughter)

0:05:22.661,0:05:25.638
This is an MRI image.

0:05:25.662,0:05:28.084
This is much sharper[br]than an ultrasound would be.

0:05:28.108,0:05:30.009
What we saw in that kidney

0:05:30.882,0:05:32.393
was that big blob there.

0:05:32.417,0:05:35.457
There were actually two of these:[br]one was growing out the front

0:05:35.481,0:05:37.904
and had already erupted[br]and latched onto the bowel.

0:05:37.928,0:05:41.147
One was growing out the back[br]and it attached to the psoas muscle,

0:05:41.171,0:05:43.956
which is a big muscle in the back[br]that I'd never heard of,

0:05:43.980,0:05:45.813
but all of a sudden I cared about it.

0:05:45.837,0:05:46.836
(Laughter)

0:05:46.860,0:05:48.023
I went home.

0:05:48.047,0:05:49.321
Now, I've been Googling --

0:05:49.345,0:05:51.735
I've been online since 1989,[br]on CompuServe.

0:05:51.759,0:05:54.389
I went home, and I know[br]you can't read the details here;

0:05:54.413,0:05:55.579
that's not important.

0:05:55.603,0:05:59.807
My point is, I went to a respected[br]medical website, WebMD,

0:05:59.831,0:06:02.089
because I know how to filter out junk.

0:06:02.113,0:06:04.089
I also found my wife online.

0:06:04.638,0:06:06.320
Before I met her,

0:06:06.344,0:06:08.820
I went through some suboptimal[br]search results.

0:06:08.844,0:06:10.392
(Laughter)

0:06:10.416,0:06:13.570
So I looked for quality information.

0:06:13.594,0:06:15.326
There's so much about trust --

0:06:15.350,0:06:17.853
what sources of information can we trust?

0:06:17.877,0:06:22.641
Where does my body end[br]and an invader start?

0:06:22.665,0:06:25.803
A cancer, a tumor, is something[br]you grow out of your own tissue.

0:06:25.827,0:06:27.392
How does that happen?

0:06:27.416,0:06:31.435
Where does medical ability end and start?

0:06:31.459,0:06:33.344
Well, so what I read on WebMD:

0:06:33.915,0:06:38.901
"The prognosis is poor[br]for progressing renal cell cancer.

0:06:38.925,0:06:41.139
Almost all patients are incurable."

0:06:42.307,0:06:46.022
I've been online long enough to know[br]if I don't like the first results I get,

0:06:46.046,0:06:47.199
I go look for more.

0:06:47.223,0:06:49.885
And what I found on other websites was,

0:06:49.909,0:06:52.273
even by the third page of Google results:

0:06:52.297,0:06:53.731
"Outlook is bleak."

0:06:54.352,0:06:56.328
"Prognosis is grim."

0:06:56.939,0:06:59.035
And I'm thinking, "What the heck?"

0:06:59.059,0:07:00.791
I didn't feel sick at all.

0:07:00.815,0:07:03.005
I mean, I'd been getting[br]tired in the evening,

0:07:03.029,0:07:05.045
but I was 56 years old, you know?

0:07:05.069,0:07:06.726
I was slowly losing weight,

0:07:06.750,0:07:10.640
but for me, that was what[br]the doctor told me to do.

0:07:10.998,0:07:12.670
It was really something.

0:07:12.694,0:07:15.874
And this is the diagram[br]of stage 4 kidney cancer

0:07:15.898,0:07:17.655
from the drug I eventually got.

0:07:17.679,0:07:20.245
Totally by coincidence,[br]there's that thing in my lung.

0:07:20.749,0:07:23.726
In the left femur, the left thigh bone,[br]there's another one.

0:07:23.750,0:07:26.115
I had one. My leg eventually snapped.

0:07:26.139,0:07:29.061
I fainted and landed on it, and it broke.

0:07:29.085,0:07:30.333
There's one in the skull,

0:07:30.357,0:07:32.820
and then for good measure,[br]I had these other tumors,

0:07:32.844,0:07:34.915
including, by the time[br]my treatment started,

0:07:34.939,0:07:36.528
one was growing out of my tongue.

0:07:36.552,0:07:38.696
I had kidney cancer[br]growing out of my tongue.

0:07:38.720,0:07:39.879
And what I read

0:07:39.903,0:07:42.291
was that my median survival was 24 weeks.

0:07:43.164,0:07:44.619
This was bad.

0:07:44.643,0:07:46.439
I was facing the grave.

0:07:47.043,0:07:49.617
I thought, "What's my mother's face[br]going to look like

0:07:49.641,0:07:50.951
on the day of my funeral?"

0:07:51.345,0:07:56.830
I had to sit down with my daughter[br]and say, "Here's the situation."

0:07:56.854,0:07:58.268
Her boyfriend was with her.

0:07:58.292,0:08:01.093
I said, "I don't want you guys[br]to get married prematurely,

0:08:01.117,0:08:03.899
just so you can do it[br]while Dad's still alive."

0:08:05.079,0:08:06.648
It's really serious.

0:08:06.672,0:08:10.252
If you wonder why patients[br]are motivated and want to help,

0:08:10.276,0:08:11.434
think about this.

0:08:11.458,0:08:15.488
Well, my doctor prescribed[br]a patient community, ACOR.org,

0:08:15.512,0:08:18.726
a network of cancer patients,[br]of all amazing things.

0:08:18.750,0:08:20.726
Very quickly they told me,

0:08:20.750,0:08:22.726
"Kidney cancer is an uncommon disease.

0:08:22.750,0:08:24.727
Get yourself to a specialist center.

0:08:24.751,0:08:27.750
There is no cure, but there's something[br]that sometimes works --

0:08:27.774,0:08:29.330
it usually doesn't --

0:08:29.354,0:08:31.168
called high-dosage interleukin.

0:08:31.192,0:08:33.200
Most hospitals don't offer it,

0:08:33.224,0:08:35.399
so they won't even tell you it exists.

0:08:35.423,0:08:37.542
Don't let them give you[br]anything else first.

0:08:37.566,0:08:40.939
And by the way, here are four doctors[br]in your part of the United States

0:08:40.963,0:08:42.914
who offer it, and their phone numbers."

0:08:42.938,0:08:45.376
How amazing is that?

0:08:45.400,0:08:48.214
(Applause)

0:08:48.238,0:08:49.434
Here's the thing:

0:08:49.458,0:08:51.046
Here we are, four years later --

0:08:51.070,0:08:54.646
you can't find a website[br]that gives patients that information.

0:08:54.670,0:08:57.203
Government-approved,[br]American Cancer Society,

0:08:57.227,0:09:00.203
but patients know[br]what patients want to know.

0:09:00.834,0:09:03.605
It's the power of patient networks.

0:09:03.629,0:09:06.858
This amazing substance --[br]again, I mentioned:

0:09:06.882,0:09:08.236
Where does my body end?

0:09:08.260,0:09:10.654
My oncologist and I talk a lot these days

0:09:10.678,0:09:13.179
because I try to keep my talks[br]technically accurate.

0:09:13.203,0:09:17.531
And he said, "You know, the immune[br]system is good at detecting invaders,

0:09:18.277,0:09:20.594
bacteria coming from outside,

0:09:20.618,0:09:23.092
but when it's your own tissue[br]that you've grown,

0:09:23.116,0:09:24.635
it's a whole different thing."

0:09:24.659,0:09:27.615
And I went through[br]a mental exercise, actually,

0:09:27.639,0:09:32.457
because I started a patient support[br]community of my own on a website,

0:09:32.481,0:09:35.515
and one of my friends --[br]one of my relatives, actually -- said,

0:09:35.539,0:09:37.289
"Look, Dave, who grew this thing?

0:09:38.894,0:09:42.917
Are you going to set yourself up[br]as mentally attacking yourself?"

0:09:42.941,0:09:44.545
So we went into it.

0:09:44.569,0:09:47.286
The story of how all that[br]happened is in the book.

0:09:47.310,0:09:49.734
Anyway, this is the way[br]the numbers unfolded.

0:09:49.758,0:09:52.889
Me being me, I put the numbers[br]from my hospital's website,

0:09:52.913,0:09:54.072
for my tumor sizes,

0:09:54.096,0:09:55.247
into a spreadsheet.

0:09:55.271,0:09:56.726
Don't worry about the numbers.

0:09:56.750,0:09:58.502
You see, that's the immune system.

0:09:58.526,0:10:00.503
Amazing thing, those two yellow lines

0:10:00.527,0:10:04.726
are where I got the two doses[br]of interleukin two months apart.

0:10:04.750,0:10:07.880
And look at how the tumor sizes[br]plummeted in between.

0:10:07.904,0:10:09.363
Just incredible.

0:10:09.387,0:10:12.817
Who knows what we'll be able to do[br]when we learn to make more use of it?

0:10:12.841,0:10:15.157
The punch line is that a year[br]and a half later,

0:10:15.181,0:10:19.481
I was there when this magnificent[br]young woman, my daughter,

0:10:19.505,0:10:20.668
got married.

0:10:20.692,0:10:22.503
And when she came down those steps,

0:10:23.091,0:10:25.321
and it was just her and me[br]for that moment,

0:10:25.345,0:10:28.567
I was so glad that she didn't have[br]to say to her mother,

0:10:28.591,0:10:30.647
"I wish Dad could have been here."

0:10:30.671,0:10:34.551
And this is what we're doing[br]when we make health care better.

0:10:34.575,0:10:37.478
Now, I want to talk briefly[br]about a couple of other patients

0:10:37.502,0:10:40.511
who are doing everything[br]in their power to improve health care.

0:10:40.535,0:10:42.174
This is Regina Holliday,

0:10:42.198,0:10:46.397
a painter in Washington DC,[br]whose husband died of kidney cancer

0:10:46.421,0:10:47.921
a year after my disease.

0:10:47.945,0:10:49.726
She's painting, here, a mural

0:10:49.750,0:10:52.726
of his horrible[br]final weeks in the hospital.

0:10:52.750,0:10:55.197
One of the things that she discovered

0:10:55.221,0:10:59.505
was that her husband's medical record[br]in this paper folder

0:10:59.529,0:11:01.055
was just disorganized.

0:11:01.079,0:11:04.344
And she thought, "You know,[br]if I have a nutrition facts label

0:11:04.368,0:11:06.091
on the side of a cereal box,

0:11:06.115,0:11:08.070
why can't there be something that simple

0:11:08.094,0:11:10.638
telling every new nurse who comes on duty,

0:11:10.662,0:11:11.887
every new doctor,

0:11:11.911,0:11:14.021
the basics about my husband's condition?"

0:11:14.045,0:11:19.321
So she painted this medical facts mural[br]with a nutrition label,

0:11:19.345,0:11:20.502
something like that,

0:11:20.526,0:11:21.726
in a diagram of him.

0:11:21.750,0:11:24.726
She then, last year, painted this diagram.

0:11:24.750,0:11:26.634
She studied health care like me.

0:11:26.658,0:11:29.094
She came to realize[br]there were a lot of people

0:11:29.118,0:11:31.128
who'd written patient-advocate books

0:11:31.152,0:11:33.995
that you just don't hear[br]about at medical conferences.

0:11:34.019,0:11:36.774
Patients are such[br]an underutilized resource.

0:11:37.679,0:11:39.404
Well, as it said in my introduction,

0:11:39.428,0:11:41.210
I've gotten somewhat known for saying

0:11:41.234,0:11:43.441
that patients should have[br]access to their data.

0:11:43.465,0:11:46.141
I actually said at one conference[br]a couple of years ago,

0:11:46.165,0:11:47.328
"Give me my damn data,

0:11:47.352,0:11:49.955
because you people[br]can't be trusted to keep it clean."

0:11:49.979,0:11:52.726
And here, she has our "damned" data --

0:11:52.750,0:11:54.044
it's a pun --

0:11:54.068,0:11:56.996
which is starting to break out,[br]starting to break through --

0:11:57.020,0:11:59.116
the water symbolizes our data.

0:11:59.140,0:12:00.291
And in fact,

0:12:00.315,0:12:03.019
I want to do a little something[br]improvisational for you.

0:12:03.043,0:12:06.912
There's a guy on Twitter that I know,[br]a health IT guy outside Boston,

0:12:06.936,0:12:09.468
and he wrote the e-Patient rap.

0:12:09.492,0:12:11.190
And it goes like this.

0:12:11.214,0:12:12.832
(Laughter)

0:12:12.856,0:12:16.916
(Beatboxing)

0:12:16.940,0:12:18.965
(Rapping) Gimme my damn data

0:12:18.989,0:12:21.457
I wanna be an e-Patient just like Dave

0:12:21.481,0:12:24.017
Gimme my damn data,[br]'cause it's my life to save

0:12:24.041,0:12:26.619
(Normal voice) Now, I'm not going[br]to go any further --

0:12:26.643,0:12:33.174
(Applause) (Cheering)

0:12:41.005,0:12:43.410
Well, thank you. That shot the timing.

0:12:43.434,0:12:45.075
(Laughter)

0:12:45.099,0:12:46.570
Think about the possibility.

0:12:46.594,0:12:50.980
Why is it that iPhones and iPads[br]advance far faster

0:12:51.004,0:12:53.244
than the health tools[br]that are available to you

0:12:53.268,0:12:55.496
to help take care of your family?

0:12:55.520,0:12:59.640
Here's a website, VisibleBody.com,[br]that I stumbled across.

0:12:59.664,0:13:02.598
And I thought, "You know,[br]I wonder what my psoas muscle is?"

0:13:02.622,0:13:04.599
So you can click on things and remove it.

0:13:04.623,0:13:07.600
And I saw, "Aha! That's the kidney[br]and the psoas muscle."

0:13:07.624,0:13:11.585
I was rotating it in 3D[br]and saying, "I understand now."

0:13:11.609,0:13:14.544
And then I realized[br]it reminded me of Google Earth,

0:13:14.568,0:13:16.881
where you can fly to any address.

0:13:17.345,0:13:22.673
And I thought, "Why not take this[br]and connect it to my digital scan data

0:13:22.697,0:13:24.981
and have Google Earth for my body?"

0:13:25.606,0:13:27.726
What did Google come out with this year?

0:13:27.750,0:13:29.754
Now there's Google Body browser.

0:13:30.358,0:13:32.335
But you see, it's still generic.

0:13:32.359,0:13:34.239
It's not my data.

0:13:34.263,0:13:37.337
But if we can get that data[br]out from behind the dam

0:13:37.361,0:13:40.338
so software innovators can pounce on it

0:13:40.362,0:13:42.638
the way software innovators like to do,

0:13:42.662,0:13:44.848
who knows what we'll be able[br]to come up with.

0:13:44.872,0:13:46.023
One final story.

0:13:46.047,0:13:50.622
This is Kelly Young, a rheumatoid[br]arthritis patient from Florida.

0:13:50.998,0:13:54.517
This is a live story,[br]unfolding just in the last few weeks.

0:13:54.541,0:14:00.085
RA patients, as they call themselves --[br]her blog is "RA Warrior" --

0:14:00.109,0:14:01.466
have a big problem,

0:14:01.490,0:14:04.268
because 40 percent of them[br]have no visible symptoms.

0:14:04.750,0:14:07.808
And that makes it really hard[br]to tell how the disease is going,

0:14:07.832,0:14:10.989
and some doctors think,[br]"Yeah right, you're really in pain."

0:14:11.013,0:14:13.726
Well, she found,[br]through her online research,

0:14:13.750,0:14:17.138
a nuclear bone scan[br]that's usually used for cancer,

0:14:17.162,0:14:19.951
but it can also reveal inflammation.

0:14:19.975,0:14:23.885
And she saw that[br]if there is no inflammation,

0:14:23.909,0:14:26.369
then the scan is a uniform gray.

0:14:26.393,0:14:27.588
So she took it.

0:14:27.612,0:14:31.893
And the radiologist's report[br]said, "No cancer found."

0:14:31.917,0:14:34.396
Well, that's not what[br]he was supposed to do with it.

0:14:34.420,0:14:36.841
So she wanted to have it read again,

0:14:36.865,0:14:38.726
and her doctor fired her.

0:14:38.750,0:14:40.633
She pulled up the CD.

0:14:40.657,0:14:44.364
He said, "If you don't want to follow[br]my instructions, go away."

0:14:44.959,0:14:47.726
So she pulled up the CD[br]of the scan images,

0:14:47.750,0:14:49.726
and look at all those hot spots.

0:14:49.750,0:14:52.726
And she's now actively engaged on her blog

0:14:52.750,0:14:55.545
in looking for assistance[br]in getting better care.

0:14:56.060,0:14:58.852
See, that is an empowered[br]patient -- no medical training.

0:14:58.876,0:15:00.847
We are, you are,

0:15:00.871,0:15:03.566
the most underused[br]resource in health care.

0:15:03.590,0:15:05.106
What she was able to do

0:15:05.130,0:15:07.872
was because she had access[br]to the raw data.

0:15:07.896,0:15:09.268
How big a deal was this?

0:15:09.292,0:15:11.038
Well at TED2009,

0:15:11.062,0:15:14.336
Tim Berners-Lee himself,[br]inventor of the Web,

0:15:14.360,0:15:17.337
gave a talk where he said[br]the next big thing

0:15:17.361,0:15:22.036
is not to have your browser find[br]other people's articles about the data,

0:15:22.060,0:15:23.242
but the raw data.

0:15:23.266,0:15:26.036
And he got them chanting[br]by the end of the talk,

0:15:26.060,0:15:29.727
"Raw data now! Raw data now!"

0:15:29.751,0:15:31.265
And I ask you,

0:15:31.289,0:15:34.005
three words, please,[br]to improve health care:

0:15:34.567,0:15:36.544
Let patients help!

0:15:36.568,0:15:38.282
Let patients help!

0:15:38.306,0:15:40.161
Let patients help!

0:15:40.185,0:15:42.103
Let patients help!

0:15:42.127,0:15:43.391
Thank you.

0:15:43.415,0:15:50.183
(Applause)

0:16:00.162,0:16:05.548
For all the patients around the world[br]watching this on the Webcast,

0:16:05.572,0:16:07.893
God bless you, everyone.[br]Let patients help.

0:16:07.917,0:16:10.555
Host: And bless yourself.[br]Thank you very much.