0:00:00.000,0:00:03.000
It's an amazing thing that we're here to talk

0:00:03.000,0:00:06.000
about the year of patients rising.

0:00:06.000,0:00:08.000
You heard stories earlier today

0:00:08.000,0:00:11.000
about patients who are taking control of their cases,

0:00:11.000,0:00:14.000
patients who are saying, "You know what, I know what the odds are,

0:00:14.000,0:00:16.000
but I'm going to go look for more information.

0:00:16.000,0:00:18.000
I'm going to define

0:00:18.000,0:00:20.000
what the terms of my success are."

0:00:20.000,0:00:22.000
I'm going to be sharing with you

0:00:22.000,0:00:24.000
how four years ago I almost died --

0:00:24.000,0:00:26.000
found out I was, in fact,

0:00:26.000,0:00:28.000
already almost dead.

0:00:28.000,0:00:31.000
And what I then found out about what's called the e-Patient movement --

0:00:31.000,0:00:33.000
I'll explain what that term means.

0:00:33.000,0:00:36.000
I had been blogging under the name Patient Dave,

0:00:36.000,0:00:38.000
and when I discovered this,

0:00:38.000,0:00:40.000
I just renamed myself e-Patient Dave.

0:00:40.000,0:00:42.000
Regarding the word "patient,"

0:00:42.000,0:00:44.000
when I first started a few years ago

0:00:44.000,0:00:46.000
getting involved in health care

0:00:46.000,0:00:48.000
and attending meetings as just a casual observer,

0:00:48.000,0:00:50.000
I noticed that people would talk about patients

0:00:50.000,0:00:53.000
as if it was somebody who's not in the room here,

0:00:53.000,0:00:55.000
somebody out there.

0:00:55.000,0:00:57.000
Some of our talks today, we still act like that.

0:00:57.000,0:00:59.000
But I'm here to tell you,

0:00:59.000,0:01:02.000
"patient" is not a third-person word.

0:01:03.000,0:01:05.000
You, yourself,

0:01:05.000,0:01:07.000
will find yourself in a hospital bed --

0:01:07.000,0:01:09.000
or your mother, your child --

0:01:09.000,0:01:12.000
there are heads nodding, people who say, "Yes, I know exactly what you mean."

0:01:12.000,0:01:15.000
So when you hear what I'm going to talk about here today,

0:01:15.000,0:01:17.000
first of all, I want to say

0:01:17.000,0:01:19.000
that I am here on behalf

0:01:19.000,0:01:21.000
of all the patients that I have ever met,

0:01:21.000,0:01:23.000
all the ones I haven't met.

0:01:23.000,0:01:26.000
This is about letting patients play a more active role

0:01:26.000,0:01:29.000
in helping health care, in fixing health care.

0:01:29.000,0:01:31.000
One of the senior doctors at my hospital,

0:01:31.000,0:01:34.000
Charlie Safran, and his colleague, Warner Slack,

0:01:34.000,0:01:36.000
have been saying for decades

0:01:36.000,0:01:39.000
that the most underutilized resource in all of health care

0:01:39.000,0:01:41.000
is the patient.

0:01:41.000,0:01:44.000
They have been saying that since the 1970s.

0:01:44.000,0:01:46.000
Now I'm going to step back in history.

0:01:46.000,0:01:48.000
This is from July, 1969.

0:01:48.000,0:01:50.000
I was a freshman in college,

0:01:50.000,0:01:52.000
and this was when we first landed on the Moon.

0:01:52.000,0:01:54.000
And it was the first time

0:01:54.000,0:01:56.000
we had ever seen from another surface --

0:01:56.000,0:01:58.000
that's the place where you and I are right now,

0:01:58.000,0:02:00.000
where we live.

0:02:00.000,0:02:02.000
The world was changing.

0:02:02.000,0:02:05.000
It was about to change in ways that nobody could foresee.

0:02:05.000,0:02:07.000
A few weeks later,

0:02:07.000,0:02:09.000
Woodstock happened.

0:02:09.000,0:02:11.000
Three days of fun and music.

0:02:11.000,0:02:13.000
Here, just for historical authenticity,

0:02:13.000,0:02:15.000
is a picture of me in that year.

0:02:15.000,0:02:18.000
(Laughter)

0:02:18.000,0:02:20.000
Yeah, the wavy hair, the blue eyes --

0:02:20.000,0:02:22.000
it was really something.

0:02:22.000,0:02:24.000
That Fall of 1969,

0:02:24.000,0:02:26.000
the Whole Earth Catalog came out.

0:02:26.000,0:02:29.000
It was a hippie journal of self-sufficiency.

0:02:29.000,0:02:32.000
We think of hippies of being just hedonists,

0:02:32.000,0:02:35.000
but there's a very strong component -- I was in that movement --

0:02:35.000,0:02:37.000
a very strong component

0:02:37.000,0:02:39.000
of being responsible for yourself.

0:02:39.000,0:02:41.000
This book's title's subtitle

0:02:41.000,0:02:43.000
is: "Access to Tools."

0:02:43.000,0:02:45.000
And it talked about how to build your own house,

0:02:45.000,0:02:47.000
how to grow your own food, all kinds of things.

0:02:47.000,0:02:49.000
In the 1980s,

0:02:49.000,0:02:51.000
this young doctor, Tom Ferguson,

0:02:51.000,0:02:54.000
was the medical editor of the Whole Earth Catalog.

0:02:54.000,0:02:56.000
And he saw that the great majority

0:02:56.000,0:02:58.000
of what we do in medicine and health care

0:02:58.000,0:03:00.000
is taking care of ourselves.

0:03:00.000,0:03:03.000
In fact, he said it was 70 to 80 percent

0:03:03.000,0:03:05.000
of how we actually take care of our bodies.

0:03:05.000,0:03:07.000
Well he also saw

0:03:07.000,0:03:10.000
that when health care turns to medical care

0:03:10.000,0:03:12.000
because of a more serious disease,

0:03:12.000,0:03:15.000
the key thing that holds us back is access to information.

0:03:15.000,0:03:18.000
And when the Web came along, that changed everything,

0:03:18.000,0:03:21.000
because not only could we find information,

0:03:21.000,0:03:24.000
we could find other people like ourselves

0:03:24.000,0:03:26.000
who could gather, who could bring us information.

0:03:26.000,0:03:29.000
And he coined this term e-Patients --

0:03:29.000,0:03:32.000
equipped, engaged, empowered, enabled.

0:03:32.000,0:03:34.000
Obviously at this stage of life

0:03:34.000,0:03:37.000
he was in a somewhat more dignified form than he was back then.

0:03:37.000,0:03:39.000
Now I was an engaged patient

0:03:39.000,0:03:41.000
long before I ever heard of the term.

0:03:41.000,0:03:44.000
In 2006, I went to my doctor for a regular physical,

0:03:44.000,0:03:46.000
and I had said, "I have a sore shoulder."

0:03:46.000,0:03:48.000
Well, I got an X-ray,

0:03:48.000,0:03:50.000
and the next morning --

0:03:50.000,0:03:52.000
you may have noticed, those of you who have been through a medical crisis

0:03:52.000,0:03:54.000
will understand this.

0:03:54.000,0:03:56.000
This morning, some of the speakers

0:03:56.000,0:04:00.000
named the date when they found out about their condition.

0:04:00.000,0:04:03.000
For me, it was 9:00 AM

0:04:03.000,0:04:05.000
on January 3, 2007.

0:04:05.000,0:04:07.000
I was at the office; my desk was clean;

0:04:07.000,0:04:11.000
I had the blue partition carpet on the walls.

0:04:11.000,0:04:14.000
The phone rang and it was my doctor.

0:04:14.000,0:04:17.000
He said, "Dave, I pulled up the X-ray image

0:04:17.000,0:04:19.000
on the screen on the computer at home."

0:04:19.000,0:04:21.000
He said, "Your shoulder's going to be fine,

0:04:21.000,0:04:23.000
but Dave, there's something in your lung."

0:04:23.000,0:04:25.000
And if you look in that red oval,

0:04:25.000,0:04:28.000
that shadow was not supposed to be there.

0:04:29.000,0:04:31.000
To make a long story short,

0:04:31.000,0:04:33.000
I said, "So you need me to get back in there?"

0:04:33.000,0:04:36.000
He said, "Yeah, we're going to need to do a CT scan of your chest."

0:04:36.000,0:04:39.000
And in parting I said, "Is there anything I should do?"

0:04:39.000,0:04:41.000
He said -- think about this one.

0:04:41.000,0:04:43.000
This is the advice your doctor gives you:

0:04:43.000,0:04:46.000
"just go home and have a glass of wine with your wife."

0:04:48.000,0:04:52.000
I went in for the CAT scan,

0:04:52.000,0:04:55.000
and it turns out there were five of these things in both my lungs.

0:04:55.000,0:04:57.000
So at that point we knew that it was cancer.

0:04:57.000,0:04:59.000
We knew it wasn't lung cancer.

0:04:59.000,0:05:02.000
That meant it was metastasized from somewhere.

0:05:02.000,0:05:05.000
The question was, where from?

0:05:05.000,0:05:07.000
So I went in for an ultrasound.

0:05:07.000,0:05:10.000
I got to do what many women have --

0:05:10.000,0:05:13.000
the jelly on the belly and bzzzz.

0:05:13.000,0:05:15.000
My wife came with me.

0:05:15.000,0:05:17.000
She's a veterinarian,

0:05:17.000,0:05:19.000
so she's seen lots of ultrasounds.

0:05:19.000,0:05:22.000
I mean, she knows I'm not a dog.

0:05:22.000,0:05:25.000
But what we saw -- this is an MRI image.

0:05:25.000,0:05:27.000
This is much sharper than an ultrasound would be.

0:05:27.000,0:05:29.000
What we saw in that kidney

0:05:29.000,0:05:31.000
was that big blob there.

0:05:31.000,0:05:33.000
And there were actually two of these.

0:05:33.000,0:05:35.000
One was growing out the front and it had already erupted,

0:05:35.000,0:05:37.000
and it latched onto the bowel.

0:05:37.000,0:05:40.000
One was growing out the back, and it attached to the soleus muscle,

0:05:40.000,0:05:43.000
which is a big muscle in the back that I'd never heard of,

0:05:43.000,0:05:46.000
but all of a sudden I cared about it.

0:05:46.000,0:05:48.000
I went home.

0:05:48.000,0:05:51.000
Now I've been Googling -- I've been online since 1989 on CompuServe.

0:05:51.000,0:05:53.000
I went home, and I know you can't read the details here;

0:05:53.000,0:05:55.000
that's not important.

0:05:55.000,0:05:57.000
My point is I went to a respected medical website,

0:05:57.000,0:05:59.000
WebMD,

0:05:59.000,0:06:02.000
because I know how to filter out junk.

0:06:02.000,0:06:04.000
I also found my wife online.

0:06:04.000,0:06:06.000
Before I met her,

0:06:06.000,0:06:08.000
I went through some suboptimal search results.

0:06:08.000,0:06:10.000
(Laughter)

0:06:10.000,0:06:13.000
So I looked for quality information.

0:06:13.000,0:06:15.000
There's so much about trust --

0:06:15.000,0:06:17.000
what sources of information can we trust?

0:06:17.000,0:06:20.000
Where does my body end

0:06:20.000,0:06:22.000
and an invader start?

0:06:22.000,0:06:25.000
And cancer, a tumor, is something you grow out of your own tissue.

0:06:25.000,0:06:27.000
How does that happen?

0:06:27.000,0:06:29.000
Where does medical ability

0:06:29.000,0:06:31.000
end and start?

0:06:31.000,0:06:33.000
Well, so what I read on WebMD:

0:06:33.000,0:06:36.000
"The prognosis is poor

0:06:36.000,0:06:38.000
for progressing renal cell cancer.

0:06:38.000,0:06:41.000
Almost all patients are incurable."

0:06:41.000,0:06:43.000
I've been online long enough to know

0:06:43.000,0:06:45.000
if I don't like the first results I get,

0:06:45.000,0:06:47.000
I go look for more.

0:06:47.000,0:06:50.000
And what I found was on other websites,

0:06:50.000,0:06:52.000
even by the third page of Google results,

0:06:52.000,0:06:54.000
"Outlook is bleak",

0:06:54.000,0:06:56.000
"Prognosis is grim."

0:06:56.000,0:06:58.000
And I'm thinking, "What the heck?"

0:06:58.000,0:07:00.000
I didn't feel sick at all.

0:07:00.000,0:07:02.000
I mean, I'd been getting tired in the evening,

0:07:02.000,0:07:04.000
but I was 56 years old.

0:07:04.000,0:07:06.000
I was slowly losing weight,

0:07:06.000,0:07:09.000
but for me, that was what the doctor told me to do.

0:07:09.000,0:07:12.000
It was really something.

0:07:12.000,0:07:15.000
And this is the diagram of stage four kidney cancer

0:07:15.000,0:07:17.000
from the drug I eventually got.

0:07:17.000,0:07:20.000
Totally by coincidence, there's that thing in my lung.

0:07:20.000,0:07:23.000
In the left femur, the left thigh bone, there's another one.

0:07:23.000,0:07:25.000
I had one. My leg eventually snapped.

0:07:25.000,0:07:28.000
I fainted and landed on it, and it broke.

0:07:28.000,0:07:30.000
There's one in the skull,

0:07:30.000,0:07:32.000
and then just for good measure, I had these other tumors --

0:07:32.000,0:07:34.000
including, by the time my treatment started,

0:07:34.000,0:07:36.000
one was growing out of my tongue.

0:07:36.000,0:07:38.000
I had kidney cancer growing out of my tongue.

0:07:38.000,0:07:40.000
And what I read was that my median survival

0:07:40.000,0:07:42.000
was 24 weeks.

0:07:42.000,0:07:44.000
This was bad.

0:07:44.000,0:07:47.000
I was facing the grave.

0:07:47.000,0:07:49.000
I thought, "What's my mother's face going to look like

0:07:49.000,0:07:51.000
on the day of my funeral?"

0:07:51.000,0:07:53.000
I had to sit down with my daughter

0:07:53.000,0:07:56.000
and say, "Here's the situation."

0:07:56.000,0:07:58.000
Her boyfriend was with her.

0:07:58.000,0:08:01.000
I said, "I don't want you guys to get married prematurely

0:08:01.000,0:08:04.000
just so you can do it while Dad's still alive."

0:08:04.000,0:08:06.000
It's really serious.

0:08:06.000,0:08:09.000
Because if you wonder why patients are motivated and want to help,

0:08:09.000,0:08:11.000
think about this.

0:08:11.000,0:08:13.000
Well, my doctor prescribed a patient community,

0:08:13.000,0:08:15.000
Acor.org,

0:08:15.000,0:08:18.000
a network of cancer patients, of all amazing things.

0:08:18.000,0:08:20.000
Very quickly they told me,

0:08:20.000,0:08:22.000
"Kidney cancer is an uncommon disease.

0:08:22.000,0:08:24.000
Get yourself to a specialist center.

0:08:24.000,0:08:27.000
There is no cure, but there's something that sometimes works --

0:08:27.000,0:08:29.000
it usually doesn't --

0:08:29.000,0:08:31.000
called high-dosage interleukin.

0:08:31.000,0:08:33.000
Most hospitals don't offer it,

0:08:33.000,0:08:35.000
so they won't even tell you it exists.

0:08:35.000,0:08:37.000
And don't let them give you anything else first.

0:08:37.000,0:08:39.000
And by the way, here are four doctors

0:08:39.000,0:08:42.000
in your part of the United States who offer it and their phone numbers."

0:08:42.000,0:08:44.000
How amazing is that?

0:08:44.000,0:08:47.000
(Applause)

0:08:47.000,0:08:49.000
Here's the thing.

0:08:49.000,0:08:51.000
Here we are, four years later:

0:08:51.000,0:08:54.000
you can't find a website that gives patients that information.

0:08:54.000,0:08:57.000
Government-approved, American Cancer Society,

0:08:57.000,0:09:00.000
but patients know what patients want to know.

0:09:00.000,0:09:03.000
It's the power of patient networks.

0:09:03.000,0:09:05.000
This amazing substance --

0:09:05.000,0:09:08.000
again I mentioned, where does my body end?

0:09:08.000,0:09:10.000
My oncologist and I talk a lot these days

0:09:10.000,0:09:12.000
because I try to keep my talks technically accurate.

0:09:12.000,0:09:14.000
And he said, "You know, the immune system

0:09:14.000,0:09:17.000
is good at detecting invaders --

0:09:17.000,0:09:20.000
bacteria coming from outside --

0:09:20.000,0:09:22.000
but when it's your own tissue that you've grown,

0:09:22.000,0:09:24.000
it's a whole different thing."

0:09:24.000,0:09:27.000
And I went through a mental exercise actually,

0:09:27.000,0:09:30.000
because I started a patient support community of my own

0:09:30.000,0:09:32.000
on a website,

0:09:32.000,0:09:34.000
and one of my friends, one of my relatives actually,

0:09:34.000,0:09:38.000
said, "Look, Dave, who grew this thing?

0:09:38.000,0:09:40.000
Are you going to set yourself up

0:09:40.000,0:09:42.000
as mentally attacking yourself?"

0:09:42.000,0:09:44.000
So we went into it.

0:09:44.000,0:09:47.000
And the story of how all that happens is in this book.

0:09:47.000,0:09:49.000
Anyway, this is the way the numbers unfolded.

0:09:49.000,0:09:52.000
Me being me, I put the numbers from my hospital's website

0:09:52.000,0:09:54.000
from my tumor sizes into a spreadsheet.

0:09:54.000,0:09:56.000
Don't worry about the numbers.

0:09:56.000,0:09:58.000
You see, that's the immune system.

0:09:58.000,0:10:00.000
Amazing thing, those two yellow lines

0:10:00.000,0:10:02.000
are where I got the two doses of interleukin

0:10:02.000,0:10:04.000
two months apart.

0:10:04.000,0:10:07.000
And look at how the tumor sizes plummeted in between.

0:10:07.000,0:10:09.000
Just incredible.

0:10:09.000,0:10:12.000
Who knows what we'll be able to do when we learn to make more use of it.

0:10:12.000,0:10:15.000
The punch line is that a year and a half later,

0:10:15.000,0:10:18.000
I was there when this magnificent young woman, my daughter,

0:10:18.000,0:10:20.000
got married.

0:10:20.000,0:10:23.000
And when she came down those steps,

0:10:23.000,0:10:25.000
and it was just her and me for that moment,

0:10:25.000,0:10:28.000
I was so glad that she didn't have to say to her mother,

0:10:28.000,0:10:30.000
"I wish Dad could have been here."

0:10:30.000,0:10:32.000
And this is what we're doing

0:10:32.000,0:10:34.000
when we make health care better.

0:10:34.000,0:10:37.000
Now I want to talk briefly about a couple of other patients

0:10:37.000,0:10:40.000
who are doing everything in their power to improve health care.

0:10:40.000,0:10:42.000
This is Regina Holliday,

0:10:42.000,0:10:44.000
a painter in Washington D.C.,

0:10:44.000,0:10:47.000
whose husband died of kidney cancer a year after my disease.

0:10:47.000,0:10:49.000
She's painting here a mural

0:10:49.000,0:10:52.000
of his horrible final weeks in the hospital.

0:10:52.000,0:10:54.000
One of the things that she discovered

0:10:54.000,0:10:56.000
was that her husband's medical record

0:10:56.000,0:10:58.000
in this paper folder

0:10:58.000,0:11:00.000
was just disorganized.

0:11:00.000,0:11:03.000
And she thought, "You know, if I have a nutrition facts label

0:11:03.000,0:11:05.000
on the side of a cereal box,

0:11:05.000,0:11:07.000
why can't there be something that simple

0:11:07.000,0:11:09.000
telling every new nurse who comes on duty,

0:11:09.000,0:11:11.000
every new doctor,

0:11:11.000,0:11:13.000
the basics about my husband's condition?"

0:11:13.000,0:11:15.000
So she painted this medical facts mural

0:11:15.000,0:11:17.000
with a nutrition label,

0:11:17.000,0:11:19.000
something like that,

0:11:19.000,0:11:21.000
in a diagram of him.

0:11:21.000,0:11:24.000
She then, last year, painted this diagram.

0:11:24.000,0:11:26.000
She studied health care like me.

0:11:26.000,0:11:28.000
She came to realize that there were a lot of people

0:11:28.000,0:11:30.000
who'd written patient advocate books

0:11:30.000,0:11:33.000
that you just don't hear about at medical conferences.

0:11:33.000,0:11:36.000
Patients are such an underutilized resource.

0:11:37.000,0:11:39.000
Well as it says in my introduction,

0:11:39.000,0:11:42.000
I've gotten somewhat known for saying that patients should have access to their data.

0:11:42.000,0:11:45.000
And I actually said at one conference a couple of years ago,

0:11:45.000,0:11:47.000
"Give me my damn data,

0:11:47.000,0:11:50.000
because you people can't be trusted to keep it clean."

0:11:50.000,0:11:52.000
And here she has our damned data --

0:11:52.000,0:11:54.000
it's a pun --

0:11:54.000,0:11:56.000
which is starting to break out, starting to break through --

0:11:56.000,0:11:59.000
the water symbolizes our data.

0:11:59.000,0:12:02.000
And in fact, I want to do a little something improvisational for you here.

0:12:02.000,0:12:04.000
There's a guy on Twitter that I know,

0:12:04.000,0:12:06.000
a health IT guy outside Boston,

0:12:06.000,0:12:09.000
and he wrote the e-Patient rap.

0:12:09.000,0:12:12.000
And it goes like this.

0:12:17.000,0:12:19.000
♫ Gimme my damn data ♫

0:12:19.000,0:12:21.000
♫ I want to be an e-Patient just like Dave ♫

0:12:21.000,0:12:24.000
♫ Gimme my damn data, cuz it's my life to save ♫

0:12:24.000,0:12:26.000
Now I'm not going to go any further.

0:12:26.000,0:12:40.000
(Applause)

0:12:40.000,0:12:43.000
Well thank you. That shot the timing.

0:12:43.000,0:12:45.000
(Laughter)

0:12:45.000,0:12:47.000
Think about the possibility,

0:12:47.000,0:12:49.000
why is it that iPhones and iPads

0:12:49.000,0:12:51.000
advance far faster

0:12:51.000,0:12:53.000
than the health tools that are available to you

0:12:53.000,0:12:55.000
to help take care of your family?

0:12:55.000,0:12:57.000
Here's a website, VisibleBody.com,

0:12:57.000,0:12:59.000
that I stumbled across.

0:12:59.000,0:13:02.000
And I thought, "You know, I wonder what my soleus muscle is?"

0:13:02.000,0:13:04.000
So you can click on things and remove it.

0:13:04.000,0:13:07.000
And I saw, "Aha, that's the kidney and the soleus muscle."

0:13:07.000,0:13:09.000
And I was rotating it in 3D

0:13:09.000,0:13:11.000
and saying, "I understand now."

0:13:11.000,0:13:14.000
And then I realized it reminded me of Google Earth,

0:13:14.000,0:13:17.000
where you can fly to any address.

0:13:17.000,0:13:19.000
And I thought, "Why not take this

0:13:19.000,0:13:22.000
and connect it to my digital scan data

0:13:22.000,0:13:25.000
and have Google Earth for my body?"

0:13:25.000,0:13:27.000
What did Google come out with this year?

0:13:27.000,0:13:30.000
Now there's Google Body browser.

0:13:30.000,0:13:32.000
But you see, it's still generic.

0:13:32.000,0:13:34.000
It's not my data.

0:13:34.000,0:13:37.000
But if we can get that data out from behind the dam

0:13:37.000,0:13:40.000
so software innovators can pounce on it,

0:13:40.000,0:13:42.000
the way software innovators like to do,

0:13:42.000,0:13:44.000
who knows what we'll be able to come up with.

0:13:44.000,0:13:46.000
One final story: this is Kelly Young,

0:13:46.000,0:13:48.000
a rheumatoid arthritis patient

0:13:48.000,0:13:50.000
from Florida.

0:13:50.000,0:13:52.000
This is a live story

0:13:52.000,0:13:54.000
unfolding just in the last few weeks.

0:13:54.000,0:13:57.000
RA patients, as they call themselves --

0:13:57.000,0:13:59.000
her blog is RA Warrior --

0:13:59.000,0:14:01.000
have a big problem

0:14:01.000,0:14:04.000
because 40 percent of them have no visible symptoms.

0:14:04.000,0:14:07.000
And that makes it just really hard to tell how the disease is going.

0:14:07.000,0:14:10.000
And some doctors think, "Yeah right, you're really in pain."

0:14:10.000,0:14:13.000
Well she found, through her online research,

0:14:13.000,0:14:15.000
a nuclear bone scan

0:14:15.000,0:14:17.000
that's usually used for cancer,

0:14:17.000,0:14:19.000
but it can also reveal inflammation.

0:14:19.000,0:14:21.000
And she saw

0:14:21.000,0:14:23.000
that if there is no inflammation

0:14:23.000,0:14:26.000
then the scan is a uniform gray.

0:14:26.000,0:14:28.000
So she took it.

0:14:28.000,0:14:31.000
And the radiologist report said, "No cancer found."

0:14:31.000,0:14:33.000
Well that's not what he was supposed to do with it.

0:14:33.000,0:14:36.000
So she had it read again, she wanted to have it read again,

0:14:36.000,0:14:38.000
and her doctor fired her.

0:14:38.000,0:14:40.000
She pulled up the CD.

0:14:40.000,0:14:42.000
He said, "If you don't want to follow my instructions,

0:14:42.000,0:14:44.000
go away."

0:14:44.000,0:14:47.000
So she pulled up the CD of the scan images,

0:14:47.000,0:14:49.000
and look at all those hot spots.

0:14:49.000,0:14:52.000
And she's now actively engaged on her blog

0:14:52.000,0:14:55.000
in looking for assistance in getting better care.

0:14:55.000,0:14:58.000
See, that is an empowered patient -- no medical training.

0:14:58.000,0:15:00.000
We are, you are,

0:15:00.000,0:15:03.000
the most underused resource in health care.

0:15:03.000,0:15:05.000
What she was able to do

0:15:05.000,0:15:07.000
was because she had access to the raw data.

0:15:07.000,0:15:09.000
How big a deal was this?

0:15:09.000,0:15:11.000
Well at TED2009,

0:15:11.000,0:15:14.000
Tim Berners-Lee himself, inventor of the Web, gave a talk

0:15:14.000,0:15:17.000
where he said the next big thing

0:15:17.000,0:15:19.000
is not to have your browser go out

0:15:19.000,0:15:21.000
and find other people's articles about the data,

0:15:21.000,0:15:23.000
but the raw data.

0:15:23.000,0:15:25.000
And he got them chanting by the end of the talk,

0:15:25.000,0:15:27.000
"Raw data now.

0:15:27.000,0:15:29.000
Raw data now."

0:15:29.000,0:15:31.000
And I ask you,

0:15:31.000,0:15:34.000
three words, please, to improve health care:

0:15:34.000,0:15:36.000
let patients help.

0:15:36.000,0:15:38.000
Let patients help.

0:15:38.000,0:15:40.000
Let patients help.

0:15:40.000,0:15:42.000
Let patients help.

0:15:42.000,0:15:44.000
Thank you.

0:15:44.000,0:16:00.000
(Applause)

0:16:00.000,0:16:03.000
For all the patients around the world

0:16:03.000,0:16:05.000
watching this on the webcast,

0:16:05.000,0:16:07.000
God bless you, everyone -- let patients help.

0:16:07.000,0:16:10.000
Host: And bless yourself. Thank you very much.