0:00:21.355,0:00:22.506
It's an amazing thing

0:00:22.530,0:00:26.512
that we're here to talk[br]about the year of patients rising.

0:00:27.306,0:00:29.026
You heard stories earlier today

0:00:29.050,0:00:32.078
about patients who are taking[br]control of their cases,

0:00:32.101,0:00:33.257
patients who are saying,

0:00:33.281,0:00:35.255
"You know what, I know what the odds are,

0:00:35.279,0:00:37.429
but I'm going to look[br]for more information.

0:00:37.453,0:00:41.213
I'm going to define[br]what the terms of my success are."

0:00:41.237,0:00:45.026
I'm going to be sharing with you[br]how, four years ago, I almost died...

0:00:45.050,0:00:47.933
Found out I was, in fact,[br]already almost dead...

0:00:47.957,0:00:50.195
And what I then found out

0:00:50.219,0:00:52.421
about what's called[br]the e-Patient movement.

0:00:52.445,0:00:54.094
I'll explain what that term means.

0:00:54.118,0:00:56.886
I had been blogging[br]under the name "Patient Dave,"

0:00:56.910,0:00:58.284
and when I discovered this,

0:00:58.308,0:01:00.606
I just renamed myself e-Patient Dave.

0:01:00.979,0:01:02.682
Regarding the word "patient":

0:01:02.706,0:01:06.642
When I first started a few years ago[br]getting involved in health care

0:01:06.666,0:01:09.026
and attending meetings[br]as just a casual observer,

0:01:09.050,0:01:11.289
I noticed that people[br]would talk about patients

0:01:11.313,0:01:13.888
as if it was somebody[br]who's not in the room here...

0:01:13.912,0:01:15.306
Somebody out there.

0:01:15.330,0:01:17.843
Some of our talks today,[br]we still act like that.

0:01:17.867,0:01:19.779
But I'm here to tell you:

0:01:19.803,0:01:22.525
"patient" is not a third-person word.

0:01:23.185,0:01:24.348
All right?

0:01:24.372,0:01:27.592
You yourself will find[br]yourself in a hospital bed...

0:01:27.616,0:01:29.271
Or your mother, your child...

0:01:29.295,0:01:31.213
There are heads nodding, people who say,

0:01:31.237,0:01:32.978
"Yes, I know exactly what you mean."

0:01:33.002,0:01:36.026
So when you hear what I'm going[br]to talk about here today,

0:01:36.050,0:01:39.080
first of all, I want to say that I am here

0:01:39.104,0:01:41.684
on behalf of all the patients[br]that I have ever met,

0:01:41.708,0:01:43.411
all the ones I haven't met.

0:01:43.435,0:01:47.208
This is about letting patients[br]play a more active role

0:01:47.232,0:01:50.209
in helping health care,[br]in fixing health care.

0:01:50.233,0:01:52.232
One of the senior doctors at my hospital,

0:01:52.256,0:01:54.830
Charlie Safran,[br]and his colleague, Warner Slack,

0:01:54.854,0:01:56.372
have been saying for decades

0:01:56.396,0:02:00.156
that the most underutilized[br]resource in all of health care

0:02:00.180,0:02:01.355
is the patient.

0:02:03.099,0:02:05.765
They have been saying that[br]since the 1970s.

0:02:05.789,0:02:07.745
Now, I'm going to step back in history.

0:02:07.769,0:02:09.655
This is from July, 1969.

0:02:09.679,0:02:11.341
I was a freshman in college,

0:02:11.365,0:02:13.968
and this was when we first[br]landed on the Moon.

0:02:14.353,0:02:15.784
And it was the first time

0:02:15.808,0:02:18.571
we had ever seen from another surface...

0:02:18.595,0:02:20.839
That's the place[br]where you and I are right now,

0:02:20.863,0:02:22.021
where we live.

0:02:22.045,0:02:23.592
The world was changing.

0:02:23.616,0:02:26.593
It was about to change[br]in ways that nobody could foresee.

0:02:26.617,0:02:30.275
A few weeks later, Woodstock happened.

0:02:30.885,0:02:32.950
Three days of fun and music.

0:02:32.998,0:02:37.731
Now, Sophie, earlier today,[br]talked about sex, drugs and rock and roll.

0:02:37.789,0:02:39.889
Here, just for historical authenticity,

0:02:39.913,0:02:41.712
is a picture of me in that year.

0:02:41.736,0:02:44.962
(Laughter)

0:02:44.986,0:02:46.963
Yeah, the wavy hair, the blue eyes...

0:02:46.987,0:02:48.200
It was really something.

0:02:48.225,0:02:53.731
I won't say which of those activities[br]I was participating in at this moment.

0:02:55.729,0:03:00.285
There's a TEDActive talk[br]by Sebastian Wernicke -

0:03:00.309,0:03:01.776
he's an analytics guy,

0:03:01.825,0:03:04.974
and he looked at all the TEDTalks[br]that had ever been done,

0:03:04.999,0:03:06.793
and how highly rated they were.

0:03:06.831,0:03:09.037
Now, any smart person[br]who is trying to improve

0:03:09.085,0:03:10.474
looks at data, right?

0:03:10.522,0:03:12.767
It turns out that the most[br]highly rated speakers

0:03:12.784,0:03:16.029
have hair that's longer than averige,[br]so I just had to include that.

0:03:16.069,0:03:17.537
(Laughter)

0:03:17.550,0:03:19.527
That fall of 1969,

0:03:19.551,0:03:21.438
the Whole Earth Catalog came out.

0:03:21.462,0:03:24.926
It was a hippie journal[br]of self-sufficiency.

0:03:25.450,0:03:28.481
We think of hippies[br]of being just hedonists,

0:03:28.505,0:03:31.706
but there's a very strong component...[br]I was in that movement...

0:03:31.730,0:03:35.074
A very strong component[br]of being responsible for yourself.

0:03:35.098,0:03:38.995
This book's title's subtitle[br]is "Access to Tools."

0:03:39.019,0:03:41.315
It talked about how to build[br]your own house,

0:03:41.339,0:03:43.744
how to grow your own food,[br]all kinds of things.

0:03:43.768,0:03:45.172
In the 1980s,

0:03:45.196,0:03:47.330
this young doctor, Tom Ferguson,

0:03:47.354,0:03:49.981
was the medical editor[br]of the Whole Earth Catalog.

0:03:51.705,0:03:56.476
He saw that the great majority[br]of what we do in medicine and health care

0:03:56.500,0:03:57.975
is taking care of ourselves.

0:03:59.411,0:04:01.762
In fact, he said it was 70 to 80 percent

0:04:01.786,0:04:04.055
of how we actually[br]take care of our bodies.

0:04:04.079,0:04:08.757
Well, he also saw that when health care[br]turns to medical care

0:04:08.781,0:04:10.691
because of a more serious disease,

0:04:10.715,0:04:14.039
the key thing that holds us back[br]is access to information.

0:04:14.063,0:04:17.329
And when the Web came along,[br]that changed everything,

0:04:17.353,0:04:19.946
because not only[br]could we find information,

0:04:19.970,0:04:22.686
we could find other people like ourselves

0:04:22.710,0:04:25.301
who could gather,[br]who could bring us information.

0:04:25.325,0:04:27.840
And he coined this term "e-Patients"...

0:04:27.864,0:04:30.195
Equipped, engaged, empowered, enabled.

0:04:30.219,0:04:31.920
Obviously, at this stage of life

0:04:31.944,0:04:35.911
he was in a somewhat more dignified[br]form than he was back then.

0:04:35.935,0:04:39.889
Now, I was an engaged patient[br]long before I ever heard of the term.

0:04:39.913,0:04:42.889
In 2006, I went to my doctor[br]for a regular physical,

0:04:42.913,0:04:45.212
and I had said, "I have a sore shoulder."

0:04:45.236,0:04:46.809
Well, I got an X-ray,

0:04:46.833,0:04:48.481
and the next morning...

0:04:48.505,0:04:52.030
You may have noticed, those of you[br]who have been through a medical crisis

0:04:52.054,0:04:53.254
will understand this.

0:04:53.278,0:04:57.740
This morning, some of the speakers[br]named the date when they found out

0:04:57.764,0:04:59.035
about their condition.

0:04:59.059,0:05:01.472
For me, it was 9am

0:05:01.496,0:05:04.200
on January 3, 2007.

0:05:04.224,0:05:06.719
I was at the office; my desk was clean.

0:05:06.743,0:05:10.050
I had the blue partition[br]carpet on the walls.

0:05:10.187,0:05:12.237
The phone rang and it was my doctor.

0:05:13.007,0:05:15.826
He said, "Dave, I pulled[br]up the X-ray image

0:05:15.850,0:05:17.940
on the screen on the computer at home." -

0:05:17.950,0:05:21.021
don't you just love[br]digital information flow? -

0:05:21.064,0:05:23.131
He said, "Your shoulder[br]is going to be fine,

0:05:23.155,0:05:25.240
but Dave, there's something in your lung."

0:05:25.264,0:05:27.172
And if you look in that red oval,

0:05:27.196,0:05:29.999
that shadow was not supposed to be there.

0:05:31.250,0:05:33.226
To make a long story short -

0:05:33.678,0:05:35.789
we talked about it a little bit -

0:05:36.150,0:05:38.305
I said, "So you need me[br]to get back in there?"

0:05:38.329,0:05:41.580
He said, "Yeah, we're going to need[br]to do a CT scan of your chest."

0:05:41.604,0:05:44.245
In parting, I said,[br]"Is there anything I should do?"

0:05:44.269,0:05:46.126
He said... think about this one,

0:05:46.150,0:05:48.126
this is the advice your doctor gives you:

0:05:48.150,0:05:51.150
"Just go home and have a glass[br]of wine with your wife."

0:05:53.923,0:05:55.749
I went in for the CAT scan.

0:05:57.118,0:06:00.345
It turns out there were[br]five of these things in both my lungs.

0:06:00.369,0:06:02.531
So at that point we knew[br]that it was cancer.

0:06:02.555,0:06:04.159
We knew it wasn't lung cancer.

0:06:04.618,0:06:07.135
That meant it was metastasized[br]from somewhere.

0:06:08.028,0:06:09.691
The question was, where from?

0:06:10.134,0:06:12.760
So I went in for an ultrasound.

0:06:12.784,0:06:15.277
I got to do what many women have...

0:06:15.301,0:06:18.156
The jelly on the belly and the, "Bzzzz!"

0:06:18.650,0:06:20.288
My wife came with me.

0:06:20.835,0:06:22.440
She's a veterinarian,

0:06:22.464,0:06:24.261
so she's seen lots of ultrasounds.

0:06:24.285,0:06:25.869
I mean, she knows I'm not a dog.

0:06:25.893,0:06:27.537
(Laughter)

0:06:27.562,0:06:28.878
What we saw -

0:06:29.361,0:06:30.862
This is an MRI image.

0:06:30.862,0:06:33.284
This is much sharper[br]than an ultrasound would be.

0:06:33.308,0:06:35.209
What we saw in that kidney

0:06:35.782,0:06:37.293
was that big blob there.

0:06:37.317,0:06:40.357
There were actually two of these:[br]one was growing out the front

0:06:40.381,0:06:42.804
and had already erupted[br]and latched onto the bowel.

0:06:42.828,0:06:46.047
One was growing out the back[br]and it attached to the psoas muscle,

0:06:46.071,0:06:48.856
which is a big muscle in the back[br]that I'd never heard of,

0:06:48.880,0:06:50.713
but all of a sudden I cared about it.

0:06:50.737,0:06:51.736
(Laughter)

0:06:51.760,0:06:52.923
I went home.

0:06:52.947,0:06:54.221
Now, I've been Googling...

0:06:54.245,0:06:56.635
I've been online since 1989,[br]on CompuServe.

0:06:56.659,0:06:59.289
I went home, and I know[br]you can't read the details here;

0:06:59.313,0:07:00.479
that's not important.

0:07:00.503,0:07:04.707
My point is, I went to a respected[br]medical website, WebMD,

0:07:05.031,0:07:07.289
because I know how to filter out junk.

0:07:08.019,0:07:09.995
I also found my wife online.

0:07:11.238,0:07:12.920
Before I met her,

0:07:12.944,0:07:15.420
I went through some suboptimal[br]search results.

0:07:15.444,0:07:16.992
(Laughter)

0:07:17.016,0:07:20.170
So I looked for quality information.

0:07:20.194,0:07:21.926
There's so much about trust...

0:07:21.950,0:07:24.453
What sources of information can we trust?

0:07:24.477,0:07:29.241
Where does my body end[br]and an invader start?

0:07:29.265,0:07:32.403
A cancer, a tumor, is something[br]you grow out of your own tissue.

0:07:32.427,0:07:33.992
How does that happen?

0:07:34.016,0:07:38.035
Where does medical ability end and start?

0:07:38.059,0:07:39.944
Well, so what I read on WebMD:

0:07:40.515,0:07:46.897
"The prognosis is poor[br]for progressing renal cell cancer.

0:07:46.925,0:07:49.139
Almost all patients are incurable."

0:07:50.307,0:07:54.022
I've been online long enough to know[br]if I don't like the first results I get,

0:07:54.046,0:07:55.199
I go look for more.

0:07:55.223,0:07:57.885
And what I found on other websites was,

0:07:57.909,0:08:00.273
even by the third page of Google results:

0:08:00.297,0:08:01.731
"Outlook is bleak."

0:08:02.652,0:08:04.628
"Prognosis is grim."

0:08:05.239,0:08:07.335
And I'm thinking, "What the heck?"

0:08:07.359,0:08:09.091
I didn't feel sick at all.

0:08:09.115,0:08:11.305
I mean, I'd been getting[br]tired in the evening,

0:08:11.329,0:08:13.345
but I was 56 years old, you know?

0:08:13.369,0:08:15.026
I was slowly losing weight,

0:08:15.050,0:08:17.898
but for me, that was what[br]the doctor told me to do.

0:08:19.298,0:08:20.970
It was really something.

0:08:20.994,0:08:24.174
And this is the diagram[br]of stage 4 kidney cancer

0:08:24.198,0:08:25.955
from the drug I eventually got.

0:08:25.979,0:08:28.545
Totally by coincidence,[br]there's that thing in my lung.

0:08:29.049,0:08:32.025
In the left femur, the left thigh bone,[br]there's another one.

0:08:32.049,0:08:34.414
I had one. My leg eventually snapped.

0:08:34.438,0:08:37.361
I fainted and landed on it, and it broke.

0:08:37.385,0:08:38.633
There's one in the skull,

0:08:38.657,0:08:41.120
and then for good measure,[br]I had these other tumors,

0:08:41.144,0:08:43.215
including, by the time[br]my treatment started,

0:08:43.239,0:08:44.828
one was growing out of my tongue.

0:08:44.852,0:08:46.996
I had kidney cancer[br]growing out of my tongue.

0:08:47.020,0:08:48.179
And what I read

0:08:48.203,0:08:50.591
was that my median survival was 24 weeks.

0:08:51.464,0:08:52.919
This was bad.

0:08:52.943,0:08:54.739
I was facing the grave.

0:08:55.343,0:08:57.917
I thought, "What's my mother's face[br]going to look like

0:08:57.941,0:08:59.251
on the day of my funeral?"

0:08:59.645,0:09:05.130
I had to sit down with my daughter[br]and say, "Here's the situation."

0:09:05.154,0:09:06.568
Her boyfriend was with her.

0:09:06.592,0:09:09.393
I said, "I don't want you guys[br]to get married prematurely,

0:09:09.417,0:09:12.199
just so you can do it[br]while Dad's still alive."

0:09:13.379,0:09:14.948
It's really serious.

0:09:15.572,0:09:19.152
If you wonder why patients[br]are motivated and want to help,

0:09:19.176,0:09:20.334
think about this.

0:09:20.358,0:09:24.388
Well, my doctor prescribed[br]a patient community, ACOR.org,

0:09:24.412,0:09:27.626
a network of cancer patients,[br]of all amazing things.

0:09:27.650,0:09:29.626
Very quickly they told me,

0:09:29.650,0:09:31.626
"Kidney cancer is an uncommon disease.

0:09:31.650,0:09:33.627
Get yourself to a specialist center.

0:09:33.651,0:09:36.650
There is no cure, but there's something[br]that sometimes works...

0:09:36.674,0:09:38.230
It usually doesn't...

0:09:38.254,0:09:40.068
Called high-dosage interleukin.

0:09:40.092,0:09:42.100
Most hospitals don't offer it,

0:09:42.124,0:09:44.299
so they won't even tell you it exists.

0:09:44.323,0:09:46.442
Don't let them give you[br]anything else first.

0:09:46.466,0:09:49.839
And by the way, here are four doctors[br]in your part of the United States

0:09:49.863,0:09:51.814
who offer it, and their phone numbers."

0:09:51.838,0:09:54.276
How amazing is that?

0:09:54.300,0:09:56.378
(Applause)

0:09:56.438,0:09:57.634
Here's the thing:

0:09:57.658,0:09:59.246
Here we are, four years later...

0:09:59.270,0:10:02.846
You can't find a website[br]that gives patients that information.

0:10:02.870,0:10:05.403
Government-approved,[br]American Cancer Society,

0:10:05.427,0:10:08.403
but patients know[br]what patients want to know.

0:10:09.034,0:10:11.805
It's the power of patient networks.

0:10:11.829,0:10:15.058
This amazing substance...[br]Again, I mentioned:

0:10:15.082,0:10:16.436
Where does my body end?

0:10:16.460,0:10:18.854
My oncologist and I talk a lot these days

0:10:18.878,0:10:21.379
because I try to keep my talks[br]technically accurate.

0:10:21.403,0:10:25.731
And he said, "You know, the immune[br]system is good at detecting invaders,

0:10:26.477,0:10:28.794
bacteria coming from outside,

0:10:28.818,0:10:31.292
but when it's your own tissue[br]that you've grown,

0:10:31.316,0:10:32.835
it's a whole different thing."

0:10:32.859,0:10:35.815
And I went through[br]a mental exercise, actually,

0:10:35.839,0:10:40.657
because I started a patient support[br]community of my own on a website,

0:10:40.681,0:10:43.715
and one of my friends...[br]One of my relatives, actually... said,

0:10:43.739,0:10:45.489
"Look, Dave, who grew this thing?

0:10:47.094,0:10:51.117
Are you going to set yourself up[br]as mentally attacking yourself?"

0:10:51.141,0:10:52.745
So we went into it.

0:10:52.769,0:10:55.486
The story of how all that[br]happened is in the book.

0:10:55.510,0:10:57.934
Anyway, this is the way[br]the numbers unfolded.

0:10:57.958,0:11:01.089
Me being me, I put the numbers[br]from my hospital's website,

0:11:01.113,0:11:02.272
for my tumor sizes,

0:11:02.296,0:11:03.447
into a spreadsheet.

0:11:03.471,0:11:04.926
Don't worry about the numbers.

0:11:04.950,0:11:06.702
You see, that's the immune system.

0:11:06.726,0:11:09.102
Amazing thing, those two yellow lines

0:11:09.127,0:11:13.326
are where I got the two doses[br]of interleukin two months apart.

0:11:13.350,0:11:16.480
And look at how the tumor sizes[br]plummeted in between.

0:11:16.504,0:11:17.963
Just incredible.

0:11:17.987,0:11:21.417
Who knows what we'll be able to do[br]when we learn to make more use of it?

0:11:21.441,0:11:23.757
The punch line is that a year[br]and a half later,

0:11:23.781,0:11:28.081
I was there when this magnificent[br]young woman, my daughter,

0:11:28.105,0:11:29.268
got married.

0:11:29.292,0:11:31.103
And when she came down those steps,

0:11:31.691,0:11:33.921
and it was just her and me[br]for that moment,

0:11:33.945,0:11:37.167
I was so glad that she didn't have[br]to say to her mother,

0:11:37.191,0:11:39.247
"I wish Dad could have been here."

0:11:39.271,0:11:43.151
And this is what we're doing[br]when we make health care better.

0:11:43.175,0:11:46.078
Now, I want to talk briefly[br]about a couple of other patients

0:11:46.102,0:11:49.111
who are doing everything[br]in their power to improve health care.

0:11:49.135,0:11:50.774
This is Regina Holliday,

0:11:50.798,0:11:54.997
a painter in Washington DC,[br]whose husband died of kidney cancer

0:11:55.021,0:11:56.521
a year after my disease.

0:11:56.545,0:11:58.326
She's painting, here, a mural

0:11:58.350,0:12:01.326
of his horrible[br]final weeks in the hospital.

0:12:01.350,0:12:03.797
One of the things that she discovered

0:12:03.821,0:12:08.105
was that her husband's medical record[br]in this paper folder

0:12:08.129,0:12:09.655
was just disorganized.

0:12:09.679,0:12:12.944
And she thought, "You know,[br]if I have a nutrition facts label

0:12:12.968,0:12:14.691
on the side of a cereal box,

0:12:14.715,0:12:16.670
why can't there be something that simple

0:12:16.694,0:12:19.238
telling every new nurse who comes on duty,

0:12:19.262,0:12:20.487
every new doctor,

0:12:20.511,0:12:22.621
the basics about my husband's condition?"

0:12:22.645,0:12:27.921
So she painted this medical facts mural[br]with a nutrition label,

0:12:27.945,0:12:29.102
something like that,

0:12:29.126,0:12:30.326
in a diagram of him.

0:12:30.351,0:12:34.325
She then, last year, painted this diagram.

0:12:34.350,0:12:36.234
She studied health care like me.

0:12:36.258,0:12:39.878
She came to realize[br]there were a lot of people

0:12:39.918,0:12:41.928
who'd written patient-advocate books

0:12:41.952,0:12:44.795
that you just don't hear[br]about at medical conferences.

0:12:44.819,0:12:47.574
Patients are such[br]an underutilized resource.

0:12:48.679,0:12:50.404
Well, as it said in my introduction,

0:12:50.428,0:12:52.210
I've gotten somewhat known for saying

0:12:52.234,0:12:54.441
that patients should have[br]access to their data.

0:12:54.465,0:12:57.141
I actually said at one conference[br]a couple of years ago,

0:12:57.165,0:12:58.328
"Give me my damn data,

0:12:58.352,0:13:00.955
because you people[br]can't be trusted to keep it clean."

0:13:00.979,0:13:03.726
And here, she has our "damned" data...

0:13:03.750,0:13:05.044
It's a pun...

0:13:05.068,0:13:07.996
Which is starting to break out,[br]starting to break through...

0:13:08.020,0:13:10.116
The water symbolizes our data.

0:13:10.140,0:13:11.291
And in fact,

0:13:11.315,0:13:14.019
I want to do a little something[br]improvisational for you.

0:13:14.043,0:13:17.912
There's a guy on Twitter that I know,[br]a health IT guy outside Boston,

0:13:17.936,0:13:20.468
and he wrote the e-Patient rap.

0:13:20.492,0:13:22.190
And it goes like this.

0:13:22.214,0:13:23.832
(Laughter)

0:13:23.856,0:13:27.916
(Beatboxing)

0:13:27.940,0:13:29.965
(Rapping) Gimme my damn data

0:13:29.989,0:13:32.457
I wanna be an e-Patient just like Dave

0:13:32.481,0:13:35.017
Gimme my damn data,[br]'cause it's my life to save

0:13:35.041,0:13:37.619
(Normal voice) Now, I'm not going[br]to go any further...

0:13:37.643,0:13:44.174
(Applause) (Cheering)

0:13:52.005,0:13:54.410
Well, thank you. That shot the timing.

0:13:54.434,0:13:56.075
(Laughter)

0:13:56.099,0:13:57.570
Think about the possibility.

0:13:57.594,0:14:01.980
Why is it that iPhones and iPads[br]advance far faster

0:14:02.004,0:14:04.244
than the health tools[br]that are available to you

0:14:04.268,0:14:06.496
to help take care of your family?

0:14:06.520,0:14:11.317
Here's a website, VisibleBody.com,[br]that I stumbled across.

0:14:11.364,0:14:14.298
And I thought, "You know,[br]I wonder what my psoas muscle is?"

0:14:14.322,0:14:16.299
So you can click on things and remove it.

0:14:16.323,0:14:19.300
And I saw, "Aha! That's the kidney[br]and the psoas muscle."

0:14:19.324,0:14:23.285
I was rotating it in 3D[br]and saying, "I understand now."

0:14:23.309,0:14:26.244
And then I realized[br]it reminded me of Google Earth,

0:14:26.268,0:14:28.581
where you can fly to any address.

0:14:29.045,0:14:34.373
And I thought, "Why not take this[br]and connect it to my digital scan data

0:14:34.397,0:14:36.681
and have Google Earth for my body?"

0:14:37.306,0:14:39.426
What did Google come out with this year?

0:14:39.450,0:14:41.454
Now there's Google Body browser.

0:14:43.758,0:14:45.735
But you see, it's still generic.

0:14:45.759,0:14:47.639
It's not my data.

0:14:47.663,0:14:50.737
But if we can get that data[br]out from behind the dam

0:14:50.761,0:14:53.738
so software innovators can pounce on it

0:14:53.762,0:14:56.038
the way software innovators like to do,

0:14:56.062,0:14:58.248
who knows what we'll be able[br]to come up with.

0:14:58.272,0:14:59.423
One final story.

0:14:59.447,0:15:04.022
This is Kelly Young, a rheumatoid[br]arthritis patient from Florida.

0:15:04.998,0:15:08.517
This is a live story,[br]unfolding just in the last few weeks.

0:15:08.541,0:15:14.085
RA patients, as they call themselves...[br]Her blog is "RA Warrior"...

0:15:14.109,0:15:15.466
Have a big problem,

0:15:15.490,0:15:18.268
because 40 percent of them[br]have no visible symptoms.

0:15:18.750,0:15:21.808
And that makes it really hard[br]to tell how the disease is going,

0:15:21.832,0:15:24.989
and some doctors think,[br]"Yeah right, you're really in pain."

0:15:25.013,0:15:27.726
Well, she found,[br]through her online research,

0:15:27.750,0:15:31.138
a nuclear bone scan[br]that's usually used for cancer,

0:15:31.162,0:15:34.434
but it can also reveal inflammation.

0:15:34.975,0:15:38.885
And she saw that[br]if there is no inflammation,

0:15:38.909,0:15:41.369
then the scan is a uniform gray.

0:15:41.393,0:15:43.587
So she took it.

0:15:43.612,0:15:47.893
And the radiologist's report[br]said, "No cancer found."

0:15:47.917,0:15:50.595
Well, that's not what[br]he was supposed to do with it.

0:15:50.620,0:15:53.940
So she wanted to have it read again,

0:15:53.965,0:15:55.826
and her doctor fired her.

0:15:55.850,0:15:57.733
She pulled up the CD.

0:15:57.757,0:16:01.464
He said, "If you don't want to follow[br]my instructions, go away."

0:16:02.059,0:16:04.826
So she pulled up the CD[br]of the scan images,

0:16:04.850,0:16:06.826
and look at all those hot spots.

0:16:06.850,0:16:09.826
And she's now actively engaged on her blog

0:16:09.850,0:16:12.645
in looking for assistance[br]in getting better care.

0:16:14.360,0:16:17.152
See, that is an empowered[br]patient... no medical training.

0:16:17.176,0:16:19.147
We are, you are,

0:16:19.171,0:16:21.866
the most underused[br]resource in health care.

0:16:21.890,0:16:23.406
What she was able to do

0:16:23.430,0:16:26.172
was because she had access[br]to the raw data.

0:16:26.196,0:16:27.568
How big a deal was this?

0:16:27.592,0:16:29.338
Well at TED2009,

0:16:29.362,0:16:32.636
Tim Berners-Lee himself,[br]inventor of the Web,

0:16:32.660,0:16:35.637
gave a talk where he said[br]the next big thing

0:16:35.661,0:16:40.336
is not to have your browser find[br]other people's articles about the data,

0:16:40.360,0:16:41.542
but the raw data.

0:16:41.566,0:16:44.336
And he got them chanting[br]by the end of the talk,

0:16:44.360,0:16:48.027
"Raw data now! Raw data now!"

0:16:48.051,0:16:49.565
And I ask you,

0:16:49.589,0:16:52.305
three words, please,[br]to improve health care:

0:16:53.267,0:16:55.244
Let patients help!

0:16:55.268,0:16:56.982
Let patients help!

0:16:57.006,0:16:58.861
Let patients help!

0:16:58.885,0:17:00.803
Let patients help!

0:17:00.827,0:17:02.091
Thank you.

0:17:02.115,0:17:08.883
(Applause)