1
00:00:01,055 --> 00:00:02,206
It's an amazing thing

2
00:00:02,230 --> 00:00:06,212
that we're here to talk
about the year of patients rising.

3
00:00:07,006 --> 00:00:08,726
You heard stories earlier today

4
00:00:08,750 --> 00:00:11,778
about patients who are taking
control of their cases,

5
00:00:11,802 --> 00:00:12,957
patients who are saying,

6
00:00:12,981 --> 00:00:14,955
"You know what, I know what the odds are,

7
00:00:14,979 --> 00:00:17,129
but I'm going to look
for more information.

8
00:00:17,153 --> 00:00:20,913
I'm going to define
what the terms of my success are."

9
00:00:20,937 --> 00:00:24,726
I'm going to be sharing with you
how, four years ago, I almost died --

10
00:00:24,750 --> 00:00:27,633
found out I was, in fact,
already almost dead --

11
00:00:27,657 --> 00:00:29,895
and what I then found out

12
00:00:29,919 --> 00:00:32,121
about what's called
the e-Patient movement.

13
00:00:32,145 --> 00:00:33,794
I'll explain what that term means.

14
00:00:33,818 --> 00:00:36,586
I had been blogging
under the name "Patient Dave,"

15
00:00:36,610 --> 00:00:37,984
and when I discovered this,

16
00:00:38,008 --> 00:00:40,306
I just renamed myself e-Patient Dave.

17
00:00:40,679 --> 00:00:42,382
Regarding the word "patient":

18
00:00:42,406 --> 00:00:46,342
When I first started a few years ago
getting involved in health care

19
00:00:46,366 --> 00:00:48,726
and attending meetings
as just a casual observer,

20
00:00:48,750 --> 00:00:50,989
I noticed that people
would talk about patients

21
00:00:51,013 --> 00:00:53,588
as if it was somebody
who's not in the room here --

22
00:00:53,612 --> 00:00:55,006
somebody out there.

23
00:00:55,030 --> 00:00:57,543
Some of our talks today,
we still act like that.

24
00:00:57,567 --> 00:00:59,479
But I'm here to tell you:

25
00:00:59,503 --> 00:01:02,225
"patient" is not a third-person word.

26
00:01:02,885 --> 00:01:04,048
All right?

27
00:01:04,072 --> 00:01:07,292
You yourself will find
yourself in a hospital bed --

28
00:01:07,316 --> 00:01:08,971
or your mother, your child --

29
00:01:08,995 --> 00:01:10,913
there are heads nodding, people who say,

30
00:01:10,937 --> 00:01:12,678
"Yes, I know exactly what you mean."

31
00:01:12,702 --> 00:01:15,726
So when you hear what I'm going
to talk about here today,

32
00:01:15,750 --> 00:01:18,780
first of all, I want to say that I am here

33
00:01:18,804 --> 00:01:21,384
on behalf of all the patients
that I have ever met,

34
00:01:21,408 --> 00:01:23,111
all the ones I haven't met.

35
00:01:23,135 --> 00:01:26,908
This is about letting patients
play a more active role

36
00:01:26,932 --> 00:01:29,909
in helping health care,
in fixing health care.

37
00:01:29,933 --> 00:01:31,932
One of the senior doctors at my hospital,

38
00:01:31,956 --> 00:01:34,530
Charlie Safran,
and his colleague, Warner Slack,

39
00:01:34,554 --> 00:01:36,072
have been saying for decades

40
00:01:36,096 --> 00:01:39,856
that the most underutilized
resource in all of health care

41
00:01:39,880 --> 00:01:41,055
is the patient.

42
00:01:41,599 --> 00:01:44,265
They have been saying that
since the 1970s.

43
00:01:44,289 --> 00:01:46,245
Now, I'm going to step back in history.

44
00:01:46,269 --> 00:01:48,155
This is from July, 1969.

45
00:01:48,179 --> 00:01:49,841
I was a freshman in college,

46
00:01:49,865 --> 00:01:52,468
and this was when we first
landed on the Moon.

47
00:01:52,853 --> 00:01:54,284
And it was the first time

48
00:01:54,308 --> 00:01:57,071
we had ever seen from another surface --

49
00:01:57,095 --> 00:01:59,339
that's the place
where you and I are right now,

50
00:01:59,363 --> 00:02:00,521
where we live.

51
00:02:00,545 --> 00:02:02,092
The world was changing.

52
00:02:02,116 --> 00:02:05,093
It was about to change
in ways that nobody could foresee.

53
00:02:05,117 --> 00:02:08,775
A few weeks later, Woodstock happened.

54
00:02:09,385 --> 00:02:11,465
Three days of fun and music.

55
00:02:11,489 --> 00:02:13,589
Here, just for historical authenticity,

56
00:02:13,613 --> 00:02:15,412
is a picture of me in that year.

57
00:02:15,436 --> 00:02:18,662
(Laughter)

58
00:02:18,686 --> 00:02:20,663
Yeah, the wavy hair, the blue eyes --

59
00:02:20,687 --> 00:02:21,900
it was really something.

60
00:02:22,350 --> 00:02:24,327
That fall of 1969,

61
00:02:24,351 --> 00:02:26,238
the Whole Earth Catalog came out.

62
00:02:26,262 --> 00:02:29,726
It was a hippie journal
of self-sufficiency.

63
00:02:29,750 --> 00:02:32,781
We think of hippies
of being just hedonists,

64
00:02:32,805 --> 00:02:36,006
but there's a very strong component --
I was in that movement --

65
00:02:36,030 --> 00:02:39,374
a very strong component
of being responsible for yourself.

66
00:02:39,398 --> 00:02:43,295
This book's title's subtitle
is "Access to Tools."

67
00:02:43,319 --> 00:02:45,615
It talked about how to build
your own house,

68
00:02:45,639 --> 00:02:48,044
how to grow your own food,
all kinds of things.

69
00:02:48,068 --> 00:02:49,472
In the 1980s,

70
00:02:49,496 --> 00:02:51,630
this young doctor, Tom Ferguson,

71
00:02:51,654 --> 00:02:54,281
was the medical editor
of the Whole Earth Catalog.

72
00:02:54,305 --> 00:02:59,076
He saw that the great majority
of what we do in medicine and health care

73
00:02:59,100 --> 00:03:00,575
is taking care of ourselves.

74
00:03:01,011 --> 00:03:03,362
In fact, he said it was 70 to 80 percent

75
00:03:03,386 --> 00:03:05,655
of how we actually
take care of our bodies.

76
00:03:05,679 --> 00:03:10,357
Well, he also saw that when health care
turns to medical care

77
00:03:10,381 --> 00:03:12,291
because of a more serious disease,

78
00:03:12,315 --> 00:03:15,639
the key thing that holds us back
is access to information.

79
00:03:15,663 --> 00:03:18,929
And when the Web came along,
that changed everything,

80
00:03:18,953 --> 00:03:21,546
because not only
could we find information,

81
00:03:21,570 --> 00:03:24,286
we could find other people like ourselves

82
00:03:24,310 --> 00:03:26,901
who could gather,
who could bring us information.

83
00:03:26,925 --> 00:03:29,440
And he coined this term "e-Patients" --

84
00:03:29,464 --> 00:03:31,795
equipped, engaged, empowered, enabled.

85
00:03:31,819 --> 00:03:33,520
Obviously, at this stage of life

86
00:03:33,544 --> 00:03:37,511
he was in a somewhat more dignified
form than he was back then.

87
00:03:37,535 --> 00:03:41,489
Now, I was an engaged patient
long before I ever heard of the term.

88
00:03:41,513 --> 00:03:44,489
In 2006, I went to my doctor
for a regular physical,

89
00:03:44,513 --> 00:03:46,812
and I had said, "I have a sore shoulder."

90
00:03:46,836 --> 00:03:48,409
Well, I got an X-ray,

91
00:03:48,433 --> 00:03:50,081
and the next morning --

92
00:03:50,105 --> 00:03:53,630
you may have noticed, those of you
who have been through a medical crisis

93
00:03:53,654 --> 00:03:54,854
will understand this.

94
00:03:54,878 --> 00:03:59,340
This morning, some of the speakers
named the date when they found out

95
00:03:59,364 --> 00:04:00,635
about their condition.

96
00:04:00,659 --> 00:04:03,072
For me, it was 9am

97
00:04:03,096 --> 00:04:05,800
on January 3, 2007.

98
00:04:05,824 --> 00:04:08,319
I was at the office; my desk was clean.

99
00:04:08,343 --> 00:04:11,650
I had the blue partition
carpet on the walls.

100
00:04:12,087 --> 00:04:14,137
The phone rang and it was my doctor.

101
00:04:14,907 --> 00:04:17,726
He said, "Dave, I pulled
up the X-ray image

102
00:04:17,750 --> 00:04:19,840
on the screen on the computer at home."

103
00:04:19,864 --> 00:04:21,931
He said, "Your shoulder
is going to be fine,

104
00:04:21,955 --> 00:04:24,040
but Dave, there's something in your lung."

105
00:04:24,064 --> 00:04:25,972
And if you look in that red oval,

106
00:04:25,996 --> 00:04:28,799
that shadow was not supposed to be there.

107
00:04:29,750 --> 00:04:31,726
To make a long story short,

108
00:04:31,750 --> 00:04:33,905
I said, "So you need me
to get back in there?"

109
00:04:33,929 --> 00:04:37,180
He said, "Yeah, we're going to need
to do a CT scan of your chest."

110
00:04:37,204 --> 00:04:39,845
In parting, I said,
"Is there anything I should do?"

111
00:04:39,869 --> 00:04:41,726
He said -- think about this one,

112
00:04:41,750 --> 00:04:43,726
this is the advice your doctor gives you:

113
00:04:43,750 --> 00:04:46,750
"Just go home and have a glass
of wine with your wife."

114
00:04:49,023 --> 00:04:50,849
I went in for the CAT scan.

115
00:04:52,218 --> 00:04:55,445
It turns out there were
five of these things in both my lungs.

116
00:04:55,469 --> 00:04:57,631
So at that point we knew
that it was cancer.

117
00:04:57,655 --> 00:04:59,259
We knew it wasn't lung cancer.

118
00:04:59,718 --> 00:05:02,235
That meant it was metastasized
from somewhere.

119
00:05:03,128 --> 00:05:04,791
The question was, where from?

120
00:05:05,234 --> 00:05:07,860
So I went in for an ultrasound.

121
00:05:07,884 --> 00:05:10,377
I got to do what many women have --

122
00:05:10,401 --> 00:05:13,256
the jelly on the belly and the, "Bzzzz!"

123
00:05:13,750 --> 00:05:15,388
My wife came with me.

124
00:05:15,935 --> 00:05:17,540
She's a veterinarian,

125
00:05:17,564 --> 00:05:19,361
so she's seen lots of ultrasounds.

126
00:05:19,385 --> 00:05:20,969
I mean, she knows I'm not a dog.

127
00:05:20,993 --> 00:05:22,637
(Laughter)

128
00:05:22,661 --> 00:05:25,638
This is an MRI image.

129
00:05:25,662 --> 00:05:28,084
This is much sharper
than an ultrasound would be.

130
00:05:28,108 --> 00:05:30,009
What we saw in that kidney

131
00:05:30,882 --> 00:05:32,393
was that big blob there.

132
00:05:32,417 --> 00:05:35,457
There were actually two of these:
one was growing out the front

133
00:05:35,481 --> 00:05:37,904
and had already erupted
and latched onto the bowel.

134
00:05:37,928 --> 00:05:41,147
One was growing out the back
and it attached to the psoas muscle,

135
00:05:41,171 --> 00:05:43,956
which is a big muscle in the back
that I'd never heard of,

136
00:05:43,980 --> 00:05:45,813
but all of a sudden I cared about it.

137
00:05:45,837 --> 00:05:46,836
(Laughter)

138
00:05:46,860 --> 00:05:48,023
I went home.

139
00:05:48,047 --> 00:05:49,321
Now, I've been Googling --

140
00:05:49,345 --> 00:05:51,735
I've been online since 1989,
on CompuServe.

141
00:05:51,759 --> 00:05:54,389
I went home, and I know
you can't read the details here;

142
00:05:54,413 --> 00:05:55,579
that's not important.

143
00:05:55,603 --> 00:05:59,807
My point is, I went to a respected
medical website, WebMD,

144
00:05:59,831 --> 00:06:02,089
because I know how to filter out junk.

145
00:06:02,113 --> 00:06:04,089
I also found my wife online.

146
00:06:04,638 --> 00:06:06,320
Before I met her,

147
00:06:06,344 --> 00:06:08,820
I went through some suboptimal
search results.

148
00:06:08,844 --> 00:06:10,392
(Laughter)

149
00:06:10,416 --> 00:06:13,570
So I looked for quality information.

150
00:06:13,594 --> 00:06:15,326
There's so much about trust --

151
00:06:15,350 --> 00:06:17,853
what sources of information can we trust?

152
00:06:17,877 --> 00:06:22,641
Where does my body end
and an invader start?

153
00:06:22,665 --> 00:06:25,803
A cancer, a tumor, is something
you grow out of your own tissue.

154
00:06:25,827 --> 00:06:27,392
How does that happen?

155
00:06:27,416 --> 00:06:31,435
Where does medical ability end and start?

156
00:06:31,459 --> 00:06:33,344
Well, so what I read on WebMD:

157
00:06:33,915 --> 00:06:38,901
"The prognosis is poor
for progressing renal cell cancer.

158
00:06:38,925 --> 00:06:41,139
Almost all patients are incurable."

159
00:06:42,307 --> 00:06:46,022
I've been online long enough to know
if I don't like the first results I get,

160
00:06:46,046 --> 00:06:47,199
I go look for more.

161
00:06:47,223 --> 00:06:49,885
And what I found on other websites was,

162
00:06:49,909 --> 00:06:52,273
even by the third page of Google results:

163
00:06:52,297 --> 00:06:53,731
"Outlook is bleak."

164
00:06:54,352 --> 00:06:56,328
"Prognosis is grim."

165
00:06:56,939 --> 00:06:59,035
And I'm thinking, "What the heck?"

166
00:06:59,059 --> 00:07:00,791
I didn't feel sick at all.

167
00:07:00,815 --> 00:07:03,005
I mean, I'd been getting
tired in the evening,

168
00:07:03,029 --> 00:07:05,045
but I was 56 years old, you know?

169
00:07:05,069 --> 00:07:06,726
I was slowly losing weight,

170
00:07:06,750 --> 00:07:10,640
but for me, that was what
the doctor told me to do.

171
00:07:10,998 --> 00:07:12,670
It was really something.

172
00:07:12,694 --> 00:07:15,874
And this is the diagram
of stage 4 kidney cancer

173
00:07:15,898 --> 00:07:17,655
from the drug I eventually got.

174
00:07:17,679 --> 00:07:20,245
Totally by coincidence,
there's that thing in my lung.

175
00:07:20,749 --> 00:07:23,726
In the left femur, the left thigh bone,
there's another one.

176
00:07:23,750 --> 00:07:26,115
I had one. My leg eventually snapped.

177
00:07:26,139 --> 00:07:29,061
I fainted and landed on it, and it broke.

178
00:07:29,085 --> 00:07:30,333
There's one in the skull,

179
00:07:30,357 --> 00:07:32,820
and then for good measure,
I had these other tumors,

180
00:07:32,844 --> 00:07:34,915
including, by the time
my treatment started,

181
00:07:34,939 --> 00:07:36,528
one was growing out of my tongue.

182
00:07:36,552 --> 00:07:38,696
I had kidney cancer
growing out of my tongue.

183
00:07:38,720 --> 00:07:39,879
And what I read

184
00:07:39,903 --> 00:07:42,291
was that my median survival was 24 weeks.

185
00:07:43,164 --> 00:07:44,619
This was bad.

186
00:07:44,643 --> 00:07:46,439
I was facing the grave.

187
00:07:47,043 --> 00:07:49,617
I thought, "What's my mother's face
going to look like

188
00:07:49,641 --> 00:07:50,951
on the day of my funeral?"

189
00:07:51,345 --> 00:07:56,830
I had to sit down with my daughter
and say, "Here's the situation."

190
00:07:56,854 --> 00:07:58,268
Her boyfriend was with her.

191
00:07:58,292 --> 00:08:01,093
I said, "I don't want you guys
to get married prematurely,

192
00:08:01,117 --> 00:08:03,899
just so you can do it
while Dad's still alive."

193
00:08:05,079 --> 00:08:06,648
It's really serious.

194
00:08:06,672 --> 00:08:10,252
If you wonder why patients
are motivated and want to help,

195
00:08:10,276 --> 00:08:11,434
think about this.

196
00:08:11,458 --> 00:08:15,488
Well, my doctor prescribed
a patient community, ACOR.org,

197
00:08:15,512 --> 00:08:18,726
a network of cancer patients,
of all amazing things.

198
00:08:18,750 --> 00:08:20,726
Very quickly they told me,

199
00:08:20,750 --> 00:08:22,726
"Kidney cancer is an uncommon disease.

200
00:08:22,750 --> 00:08:24,727
Get yourself to a specialist center.

201
00:08:24,751 --> 00:08:27,750
There is no cure, but there's something
that sometimes works --

202
00:08:27,774 --> 00:08:29,330
it usually doesn't --

203
00:08:29,354 --> 00:08:31,168
called high-dosage interleukin.

204
00:08:31,192 --> 00:08:33,200
Most hospitals don't offer it,

205
00:08:33,224 --> 00:08:35,399
so they won't even tell you it exists.

206
00:08:35,423 --> 00:08:37,542
Don't let them give you
anything else first.

207
00:08:37,566 --> 00:08:40,939
And by the way, here are four doctors
in your part of the United States

208
00:08:40,963 --> 00:08:42,914
who offer it, and their phone numbers."

209
00:08:42,938 --> 00:08:45,376
How amazing is that?

210
00:08:45,400 --> 00:08:48,214
(Applause)

211
00:08:48,238 --> 00:08:49,434
Here's the thing:

212
00:08:49,458 --> 00:08:51,046
Here we are, four years later --

213
00:08:51,070 --> 00:08:54,646
you can't find a website
that gives patients that information.

214
00:08:54,670 --> 00:08:57,203
Government-approved,
American Cancer Society,

215
00:08:57,227 --> 00:09:00,203
but patients know
what patients want to know.

216
00:09:00,834 --> 00:09:03,605
It's the power of patient networks.

217
00:09:03,629 --> 00:09:06,858
This amazing substance --
again, I mentioned:

218
00:09:06,882 --> 00:09:08,236
Where does my body end?

219
00:09:08,260 --> 00:09:10,654
My oncologist and I talk a lot these days

220
00:09:10,678 --> 00:09:13,179
because I try to keep my talks
technically accurate.

221
00:09:13,203 --> 00:09:17,531
And he said, "You know, the immune
system is good at detecting invaders,

222
00:09:18,277 --> 00:09:20,594
bacteria coming from outside,

223
00:09:20,618 --> 00:09:23,092
but when it's your own tissue
that you've grown,

224
00:09:23,116 --> 00:09:24,635
it's a whole different thing."

225
00:09:24,659 --> 00:09:27,615
And I went through
a mental exercise, actually,

226
00:09:27,639 --> 00:09:32,457
because I started a patient support
community of my own on a website,

227
00:09:32,481 --> 00:09:35,515
and one of my friends --
one of my relatives, actually -- said,

228
00:09:35,539 --> 00:09:37,289
"Look, Dave, who grew this thing?

229
00:09:38,894 --> 00:09:42,917
Are you going to set yourself up
as mentally attacking yourself?"

230
00:09:42,941 --> 00:09:44,545
So we went into it.

231
00:09:44,569 --> 00:09:47,286
The story of how all that
happened is in the book.

232
00:09:47,310 --> 00:09:49,734
Anyway, this is the way
the numbers unfolded.

233
00:09:49,758 --> 00:09:52,889
Me being me, I put the numbers
from my hospital's website,

234
00:09:52,913 --> 00:09:54,072
for my tumor sizes,

235
00:09:54,096 --> 00:09:55,247
into a spreadsheet.

236
00:09:55,271 --> 00:09:56,726
Don't worry about the numbers.

237
00:09:56,750 --> 00:09:58,502
You see, that's the immune system.

238
00:09:58,526 --> 00:10:00,503
Amazing thing, those two yellow lines

239
00:10:00,527 --> 00:10:04,726
are where I got the two doses
of interleukin two months apart.

240
00:10:04,750 --> 00:10:07,880
And look at how the tumor sizes
plummeted in between.

241
00:10:07,904 --> 00:10:09,363
Just incredible.

242
00:10:09,387 --> 00:10:12,817
Who knows what we'll be able to do
when we learn to make more use of it?

243
00:10:12,841 --> 00:10:15,157
The punch line is that a year
and a half later,

244
00:10:15,181 --> 00:10:19,481
I was there when this magnificent
young woman, my daughter,

245
00:10:19,505 --> 00:10:20,668
got married.

246
00:10:20,692 --> 00:10:22,503
And when she came down those steps,

247
00:10:23,091 --> 00:10:25,321
and it was just her and me
for that moment,

248
00:10:25,345 --> 00:10:28,567
I was so glad that she didn't have
to say to her mother,

249
00:10:28,591 --> 00:10:30,647
"I wish Dad could have been here."

250
00:10:30,671 --> 00:10:34,551
And this is what we're doing
when we make health care better.

251
00:10:34,575 --> 00:10:37,478
Now, I want to talk briefly
about a couple of other patients

252
00:10:37,502 --> 00:10:40,511
who are doing everything
in their power to improve health care.

253
00:10:40,535 --> 00:10:42,174
This is Regina Holliday,

254
00:10:42,198 --> 00:10:46,397
a painter in Washington DC,
whose husband died of kidney cancer

255
00:10:46,421 --> 00:10:47,921
a year after my disease.

256
00:10:47,945 --> 00:10:49,726
She's painting, here, a mural

257
00:10:49,750 --> 00:10:52,726
of his horrible
final weeks in the hospital.

258
00:10:52,750 --> 00:10:55,197
One of the things that she discovered

259
00:10:55,221 --> 00:10:59,505
was that her husband's medical record
in this paper folder

260
00:10:59,529 --> 00:11:01,055
was just disorganized.

261
00:11:01,079 --> 00:11:04,344
And she thought, "You know,
if I have a nutrition facts label

262
00:11:04,368 --> 00:11:06,091
on the side of a cereal box,

263
00:11:06,115 --> 00:11:08,070
why can't there be something that simple

264
00:11:08,094 --> 00:11:10,638
telling every new nurse who comes on duty,

265
00:11:10,662 --> 00:11:11,887
every new doctor,

266
00:11:11,911 --> 00:11:14,021
the basics about my husband's condition?"

267
00:11:14,045 --> 00:11:19,321
So she painted this medical facts mural
with a nutrition label,

268
00:11:19,345 --> 00:11:20,502
something like that,

269
00:11:20,526 --> 00:11:21,726
in a diagram of him.

270
00:11:21,750 --> 00:11:24,726
She then, last year, painted this diagram.

271
00:11:24,750 --> 00:11:26,634
She studied health care like me.

272
00:11:26,658 --> 00:11:29,094
She came to realize
there were a lot of people

273
00:11:29,118 --> 00:11:31,128
who'd written patient-advocate books

274
00:11:31,152 --> 00:11:33,995
that you just don't hear
about at medical conferences.

275
00:11:34,019 --> 00:11:36,774
Patients are such
an underutilized resource.

276
00:11:37,679 --> 00:11:39,404
Well, as it said in my introduction,

277
00:11:39,428 --> 00:11:41,210
I've gotten somewhat known for saying

278
00:11:41,234 --> 00:11:43,441
that patients should have
access to their data.

279
00:11:43,465 --> 00:11:46,141
I actually said at one conference
a couple of years ago,

280
00:11:46,165 --> 00:11:47,328
"Give me my damn data,

281
00:11:47,352 --> 00:11:49,955
because you people
can't be trusted to keep it clean."

282
00:11:49,979 --> 00:11:52,726
And here, she has our "damned" data --

283
00:11:52,750 --> 00:11:54,044
it's a pun --

284
00:11:54,068 --> 00:11:56,996
which is starting to break out,
starting to break through --

285
00:11:57,020 --> 00:11:59,116
the water symbolizes our data.

286
00:11:59,140 --> 00:12:00,291
And in fact,

287
00:12:00,315 --> 00:12:03,019
I want to do a little something
improvisational for you.

288
00:12:03,043 --> 00:12:06,912
There's a guy on Twitter that I know,
a health IT guy outside Boston,

289
00:12:06,936 --> 00:12:09,468
and he wrote the e-Patient rap.

290
00:12:09,492 --> 00:12:11,190
And it goes like this.

291
00:12:11,214 --> 00:12:12,832
(Laughter)

292
00:12:12,856 --> 00:12:16,916
(Beatboxing)

293
00:12:16,940 --> 00:12:18,965
(Rapping) Gimme my damn data

294
00:12:18,989 --> 00:12:21,457
I wanna be an e-Patient just like Dave

295
00:12:21,481 --> 00:12:24,017
Gimme my damn data,
'cause it's my life to save

296
00:12:24,041 --> 00:12:26,619
(Normal voice) Now, I'm not going
to go any further --

297
00:12:26,643 --> 00:12:33,174
(Applause) (Cheering)

298
00:12:41,005 --> 00:12:43,410
Well, thank you. That shot the timing.

299
00:12:43,434 --> 00:12:45,075
(Laughter)

300
00:12:45,099 --> 00:12:46,570
Think about the possibility.

301
00:12:46,594 --> 00:12:50,980
Why is it that iPhones and iPads
advance far faster

302
00:12:51,004 --> 00:12:53,244
than the health tools
that are available to you

303
00:12:53,268 --> 00:12:55,496
to help take care of your family?

304
00:12:55,520 --> 00:12:59,640
Here's a website, VisibleBody.com,
that I stumbled across.

305
00:12:59,664 --> 00:13:02,598
And I thought, "You know,
I wonder what my psoas muscle is?"

306
00:13:02,622 --> 00:13:04,599
So you can click on things and remove it.

307
00:13:04,623 --> 00:13:07,600
And I saw, "Aha! That's the kidney
and the psoas muscle."

308
00:13:07,624 --> 00:13:11,585
I was rotating it in 3D
and saying, "I understand now."

309
00:13:11,609 --> 00:13:14,544
And then I realized
it reminded me of Google Earth,

310
00:13:14,568 --> 00:13:16,881
where you can fly to any address.

311
00:13:17,345 --> 00:13:22,673
And I thought, "Why not take this
and connect it to my digital scan data

312
00:13:22,697 --> 00:13:24,981
and have Google Earth for my body?"

313
00:13:25,606 --> 00:13:27,726
What did Google come out with this year?

314
00:13:27,750 --> 00:13:29,754
Now there's Google Body browser.

315
00:13:30,358 --> 00:13:32,335
But you see, it's still generic.

316
00:13:32,359 --> 00:13:34,239
It's not my data.

317
00:13:34,263 --> 00:13:37,337
But if we can get that data
out from behind the dam

318
00:13:37,361 --> 00:13:40,338
so software innovators can pounce on it

319
00:13:40,362 --> 00:13:42,638
the way software innovators like to do,

320
00:13:42,662 --> 00:13:44,848
who knows what we'll be able
to come up with.

321
00:13:44,872 --> 00:13:46,023
One final story.

322
00:13:46,047 --> 00:13:50,622
This is Kelly Young, a rheumatoid
arthritis patient from Florida.

323
00:13:50,998 --> 00:13:54,517
This is a live story,
unfolding just in the last few weeks.

324
00:13:54,541 --> 00:14:00,085
RA patients, as they call themselves --
her blog is "RA Warrior" --

325
00:14:00,109 --> 00:14:01,466
have a big problem,

326
00:14:01,490 --> 00:14:04,268
because 40 percent of them
have no visible symptoms.

327
00:14:04,750 --> 00:14:07,808
And that makes it really hard
to tell how the disease is going,

328
00:14:07,832 --> 00:14:10,989
and some doctors think,
"Yeah right, you're really in pain."

329
00:14:11,013 --> 00:14:13,726
Well, she found,
through her online research,

330
00:14:13,750 --> 00:14:17,138
a nuclear bone scan
that's usually used for cancer,

331
00:14:17,162 --> 00:14:19,951
but it can also reveal inflammation.

332
00:14:19,975 --> 00:14:23,885
And she saw that
if there is no inflammation,

333
00:14:23,909 --> 00:14:26,369
then the scan is a uniform gray.

334
00:14:26,393 --> 00:14:27,588
So she took it.

335
00:14:27,612 --> 00:14:31,893
And the radiologist's report
said, "No cancer found."

336
00:14:31,917 --> 00:14:34,396
Well, that's not what
he was supposed to do with it.

337
00:14:34,420 --> 00:14:36,841
So she wanted to have it read again,

338
00:14:36,865 --> 00:14:38,726
and her doctor fired her.

339
00:14:38,750 --> 00:14:40,633
She pulled up the CD.

340
00:14:40,657 --> 00:14:44,364
He said, "If you don't want to follow
my instructions, go away."

341
00:14:44,959 --> 00:14:47,726
So she pulled up the CD
of the scan images,

342
00:14:47,750 --> 00:14:49,726
and look at all those hot spots.

343
00:14:49,750 --> 00:14:52,726
And she's now actively engaged on her blog

344
00:14:52,750 --> 00:14:55,545
in looking for assistance
in getting better care.

345
00:14:56,060 --> 00:14:58,852
See, that is an empowered
patient -- no medical training.

346
00:14:58,876 --> 00:15:00,847
We are, you are,

347
00:15:00,871 --> 00:15:03,566
the most underused
resource in health care.

348
00:15:03,590 --> 00:15:05,106
What she was able to do

349
00:15:05,130 --> 00:15:07,872
was because she had access
to the raw data.

350
00:15:07,896 --> 00:15:09,268
How big a deal was this?

351
00:15:09,292 --> 00:15:11,038
Well at TED2009,

352
00:15:11,062 --> 00:15:14,336
Tim Berners-Lee himself,
inventor of the Web,

353
00:15:14,360 --> 00:15:17,337
gave a talk where he said
the next big thing

354
00:15:17,361 --> 00:15:22,036
is not to have your browser find
other people's articles about the data,

355
00:15:22,060 --> 00:15:23,242
but the raw data.

356
00:15:23,266 --> 00:15:26,036
And he got them chanting
by the end of the talk,

357
00:15:26,060 --> 00:15:29,727
"Raw data now! Raw data now!"

358
00:15:29,751 --> 00:15:31,265
And I ask you,

359
00:15:31,289 --> 00:15:34,005
three words, please,
to improve health care:

360
00:15:34,567 --> 00:15:36,544
Let patients help!

361
00:15:36,568 --> 00:15:38,282
Let patients help!

362
00:15:38,306 --> 00:15:40,161
Let patients help!

363
00:15:40,185 --> 00:15:42,103
Let patients help!

364
00:15:42,127 --> 00:15:43,391
Thank you.

365
00:15:43,415 --> 00:15:50,183
(Applause)

366
00:16:00,162 --> 00:16:05,548
For all the patients around the world
watching this on the Webcast,

367
00:16:05,572 --> 00:16:07,893
God bless you, everyone.
Let patients help.

368
00:16:07,917 --> 00:16:10,555
Host: And bless yourself.
Thank you very much.