WEBVTT

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It's an amazing thing

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that we're here to talk
about the year of patients rising.

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You heard stories earlier today

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about patients who are taking
control of their cases,

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patients who are saying,

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"You know what, I know what the odds are,

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but I'm going to look
for more information.

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I'm going to define
what the terms of my success are."

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I'm going to be sharing with you
how, four years ago, I almost died...

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Found out I was, in fact,
already almost dead...

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And what I then found out

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about what's called
the e-Patient movement.

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I'll explain what that term means.

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I had been blogging
under the name "Patient Dave,"

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and when I discovered this,

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I just renamed myself e-Patient Dave.

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Regarding the word "patient":

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When I first started a few years ago
getting involved in health care

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and attending meetings
as just a casual observer,

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I noticed that people
would talk about patients

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as if it was somebody
who's not in the room here...

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Somebody out there.

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Some of our talks today,
we still act like that.

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But I'm here to tell you:

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"patient" is not a third-person word.

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All right?

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You yourself will find
yourself in a hospital bed...

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Or your mother, your child...

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There are heads nodding, people who say,

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"Yes, I know exactly what you mean."

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So when you hear what I'm going
to talk about here today,

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first of all, I want to say that I am here

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on behalf of all the patients
that I have ever met,

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all the ones I haven't met.

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This is about letting patients
play a more active role

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in helping health care,
in fixing health care.

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One of the senior doctors at my hospital,

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Charlie Safran,
and his colleague, Warner Slack,

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have been saying for decades

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that the most underutilized
resource in all of health care

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is the patient.

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They have been saying that
since the 1970s.

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Now, I'm going to step back in history.

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This is from July, 1969.

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I was a freshman in college,

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and this was when we first
landed on the Moon.

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And it was the first time

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we had ever seen from another surface...

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That's the place
where you and I are right now,

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where we live.

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The world was changing.

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It was about to change
in ways that nobody could foresee.

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A few weeks later, Woodstock happened.

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Three days of fun and music.

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Now, Sophie, earlier today,
talked about sex, drugs and rock and roll.

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Here, just for historical authenticity,

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is a picture of me in that year.

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(Laughter)

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Yeah, the wavy hair, the blue eyes...

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It was really something.

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I won't say which of those activities
I was participating in at this moment.

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There's a TEDActive talk
by Sebastian Wernicke -

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he's an analytics guy,

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and he looked at all the TEDTalks
that had ever been done,

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and how highly rated they were.

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Now, any smart person
who is trying to improve

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looks at data, right?

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It turns out that the most
highly rated speakers

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have hair that's longer than averige,
so I just had to include that.

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(Laughter)

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That fall of 1969,

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the Whole Earth Catalog came out.

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It was a hippie journal
of self-sufficiency.

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We think of hippies
of being just hedonists,

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but there's a very strong component...
I was in that movement...

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A very strong component
of being responsible for yourself.

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This book's title's subtitle
is "Access to Tools."

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It talked about how to build
your own house,

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how to grow your own food,
all kinds of things.

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In the 1980s,

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this young doctor, Tom Ferguson,

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was the medical editor
of the Whole Earth Catalog.

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He saw that the great majority
of what we do in medicine and health care

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is taking care of ourselves.

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In fact, he said it was 70 to 80 percent

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of how we actually
take care of our bodies.

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Well, he also saw that when health care
turns to medical care

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because of a more serious disease,

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the key thing that holds us back
is access to information.

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And when the Web came along,
that changed everything,

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because not only
could we find information,

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we could find other people like ourselves

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who could gather,
who could bring us information.

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And he coined this term "e-Patients"...

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Equipped, engaged, empowered, enabled.

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Obviously, at this stage of life

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he was in a somewhat more dignified
form than he was back then.

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Now, I was an engaged patient
long before I ever heard of the term.

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In 2006, I went to my doctor
for a regular physical,

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and I had said, "I have a sore shoulder."

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Well, I got an X-ray,

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and the next morning...

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You may have noticed, those of you
who have been through a medical crisis

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will understand this.

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This morning, some of the speakers
named the date when they found out

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about their condition.

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For me, it was 9am

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on January 3, 2007.

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I was at the office; my desk was clean.

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I had the blue partition
carpet on the walls.

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The phone rang and it was my doctor.

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He said, "Dave, I pulled
up the X-ray image

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on the screen on the computer at home." -

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don't you just love
digital information flow? -

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He said, "Your shoulder
is going to be fine,

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but Dave, there's something in your lung."

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And if you look in that red oval,

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that shadow was not supposed to be there.

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To make a long story short -

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we talked about it a little bit -

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I said, "So you need me
to get back in there?"

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He said, "Yeah, we're going to need
to do a CT scan of your chest."

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In parting, I said,
"Is there anything I should do?"

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He said... think about this one,

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this is the advice your doctor gives you:

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"Just go home and have a glass
of wine with your wife."

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I went in for the CAT scan.

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It turns out there were
five of these things in both my lungs.

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So at that point we knew
that it was cancer.

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We knew it wasn't lung cancer.

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That meant it was metastasized
from somewhere.

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The question was, where from?

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So I went in for an ultrasound.

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I got to do what many women have...

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The jelly on the belly and the, "Bzzzz!"

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My wife came with me.

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She's a veterinarian,

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so she's seen lots of ultrasounds.

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I mean, she knows I'm not a dog.

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(Laughter)

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What we saw -

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This is an MRI image.

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This is much sharper
than an ultrasound would be.

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What we saw in that kidney

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was that big blob there.

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There were actually two of these:
one was growing out the front

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and had already erupted
and latched onto the bowel.

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One was growing out the back
and it attached to the psoas muscle,

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which is a big muscle in the back
that I'd never heard of,

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but all of a sudden I cared about it.

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(Laughter)

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I went home.

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Now, I've been Googling...

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I've been online since 1989,
on CompuServe.

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I went home, and I know
you can't read the details here;

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that's not important.

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My point is, I went to a respected
medical website, WebMD,

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because I know how to filter out junk.

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I also found my wife online.

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Before I met her,

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I went through some suboptimal
search results.

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(Laughter)

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So I looked for quality information.

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There's so much about trust...

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What sources of information can we trust?

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Where does my body end
and an invader start?

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A cancer, a tumor, is something
you grow out of your own tissue.

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How does that happen?

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Where does medical ability end and start?

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Well, so what I read on WebMD:

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"The prognosis is poor
for progressing renal cell cancer.

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Almost all patients are incurable."

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I've been online long enough to know
if I don't like the first results I get,

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I go look for more.

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And what I found on other websites was,

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even by the third page of Google results:

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"Outlook is bleak."

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"Prognosis is grim."

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And I'm thinking, "What the heck?"

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I didn't feel sick at all.

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I mean, I'd been getting
tired in the evening,

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but I was 56 years old, you know?

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I was slowly losing weight,

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but for me, that was what
the doctor told me to do.

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It was really something.

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And this is the diagram
of stage 4 kidney cancer

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from the drug I eventually got.

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Totally by coincidence,
there's that thing in my lung.

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In the left femur, the left thigh bone,
there's another one.

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I had one. My leg eventually snapped.

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I fainted and landed on it, and it broke.

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There's one in the skull,

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and then for good measure,
I had these other tumors,

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including, by the time
my treatment started,

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one was growing out of my tongue.

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I had kidney cancer
growing out of my tongue.

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And what I read

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was that my median survival was 24 weeks.

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This was bad.

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I was facing the grave.

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I thought, "What's my mother's face
going to look like

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on the day of my funeral?"

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I had to sit down with my daughter
and say, "Here's the situation."

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Her boyfriend was with her.

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I said, "I don't want you guys
to get married prematurely,

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just so you can do it
while Dad's still alive."

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It's really serious.

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If you wonder why patients
are motivated and want to help,

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think about this.

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Well, my doctor prescribed
a patient community, ACOR.org,

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a network of cancer patients,
of all amazing things.

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Very quickly they told me,

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"Kidney cancer is an uncommon disease.

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Get yourself to a specialist center.

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There is no cure, but there's something
that sometimes works...

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It usually doesn't...

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Called high-dosage interleukin.

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Most hospitals don't offer it,

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so they won't even tell you it exists.

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Don't let them give you
anything else first.

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And by the way, here are four doctors
in your part of the United States

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who offer it, and their phone numbers."

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How amazing is that?

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(Applause)

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Here's the thing:

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Here we are, four years later...

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You can't find a website
that gives patients that information.

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Government-approved,
American Cancer Society,

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but patients know
what patients want to know.

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It's the power of patient networks.

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This amazing substance...
Again, I mentioned:

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Where does my body end?

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My oncologist and I talk a lot these days

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because I try to keep my talks
technically accurate.

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And he said, "You know, the immune
system is good at detecting invaders,

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bacteria coming from outside,

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but when it's your own tissue
that you've grown,

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it's a whole different thing."

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And I went through
a mental exercise, actually,

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because I started a patient support
community of my own on a website,

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and one of my friends...
One of my relatives, actually... said,

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"Look, Dave, who grew this thing?

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Are you going to set yourself up
as mentally attacking yourself?"

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So we went into it.

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The story of how all that
happened is in the book.

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Anyway, this is the way
the numbers unfolded.

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Me being me, I put the numbers
from my hospital's website,

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for my tumor sizes,

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into a spreadsheet.

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Don't worry about the numbers.

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You see, that's the immune system.

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Amazing thing, those two yellow lines

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are where I got the two doses
of interleukin two months apart.

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And look at how the tumor sizes
plummeted in between.

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Just incredible.

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Who knows what we'll be able to do
when we learn to make more use of it?

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The punch line is that a year
and a half later,

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I was there when this magnificent
young woman, my daughter,

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got married.

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And when she came down those steps,

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and it was just her and me
for that moment,

00:11:33.945 --> 00:11:37.167
I was so glad that she didn't have
to say to her mother,

00:11:37.191 --> 00:11:39.247
"I wish Dad could have been here."

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And this is what we're doing
when we make health care better.

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Now, I want to talk briefly
about a couple of other patients

00:11:46.102 --> 00:11:49.111
who are doing everything
in their power to improve health care.

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This is Regina Holliday,

00:11:50.798 --> 00:11:54.997
a painter in Washington DC,
whose husband died of kidney cancer

00:11:55.021 --> 00:11:56.521
a year after my disease.

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She's painting, here, a mural

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of his horrible
final weeks in the hospital.

00:12:01.350 --> 00:12:03.797
One of the things that she discovered

00:12:03.821 --> 00:12:08.105
was that her husband's medical record
in this paper folder

00:12:08.129 --> 00:12:09.655
was just disorganized.

00:12:09.679 --> 00:12:12.944
And she thought, "You know,
if I have a nutrition facts label

00:12:12.968 --> 00:12:14.691
on the side of a cereal box,

00:12:14.715 --> 00:12:16.670
why can't there be something that simple

00:12:16.694 --> 00:12:19.238
telling every new nurse who comes on duty,

00:12:19.262 --> 00:12:20.487
every new doctor,

00:12:20.511 --> 00:12:22.621
the basics about my husband's condition?"

00:12:22.645 --> 00:12:27.921
So she painted this medical facts mural
with a nutrition label,

00:12:27.945 --> 00:12:29.102
something like that,

00:12:29.126 --> 00:12:30.326
in a diagram of him.

00:12:30.351 --> 00:12:34.325
She then, last year, painted this diagram.

00:12:34.350 --> 00:12:36.234
She studied health care like me.

00:12:36.258 --> 00:12:39.878
She came to realize
there were a lot of people

00:12:39.918 --> 00:12:41.928
who'd written patient-advocate books

00:12:41.952 --> 00:12:44.795
that you just don't hear
about at medical conferences.

00:12:44.819 --> 00:12:47.574
Patients are such
an underutilized resource.

00:12:48.679 --> 00:12:50.404
Well, as it said in my introduction,

00:12:50.428 --> 00:12:52.210
I've gotten somewhat known for saying

00:12:52.234 --> 00:12:54.441
that patients should have
access to their data.

00:12:54.465 --> 00:12:57.141
I actually said at one conference
a couple of years ago,

00:12:57.165 --> 00:12:58.328
"Give me my damn data,

00:12:58.352 --> 00:13:00.955
because you people
can't be trusted to keep it clean."

00:13:00.979 --> 00:13:03.726
And here, she has our "damned" data...

00:13:03.750 --> 00:13:05.044
It's a pun...

00:13:05.068 --> 00:13:07.996
Which is starting to break out,
starting to break through...

00:13:08.020 --> 00:13:10.116
The water symbolizes our data.

00:13:10.140 --> 00:13:11.291
And in fact,

00:13:11.315 --> 00:13:14.019
I want to do a little something
improvisational for you.

00:13:14.043 --> 00:13:17.912
There's a guy on Twitter that I know,
a health IT guy outside Boston,

00:13:17.936 --> 00:13:20.468
and he wrote the e-Patient rap.

00:13:20.492 --> 00:13:22.190
And it goes like this.

00:13:22.214 --> 00:13:23.832
(Laughter)

00:13:23.856 --> 00:13:27.916
(Beatboxing)

00:13:27.940 --> 00:13:29.965
(Rapping) Gimme my damn data

00:13:29.989 --> 00:13:32.457
I wanna be an e-Patient just like Dave

00:13:32.481 --> 00:13:35.017
Gimme my damn data,
'cause it's my life to save

00:13:35.041 --> 00:13:37.619
(Normal voice) Now, I'm not going
to go any further...

00:13:37.643 --> 00:13:44.174
(Applause) (Cheering)

00:13:52.005 --> 00:13:54.410
Well, thank you. That shot the timing.

00:13:54.434 --> 00:13:56.075
(Laughter)

00:13:56.099 --> 00:13:57.570
Think about the possibility.

00:13:57.594 --> 00:14:01.980
Why is it that iPhones and iPads
advance far faster

00:14:02.004 --> 00:14:04.244
than the health tools
that are available to you

00:14:04.268 --> 00:14:06.496
to help take care of your family?

00:14:06.520 --> 00:14:11.317
Here's a website, VisibleBody.com,
that I stumbled across.

00:14:11.364 --> 00:14:14.298
And I thought, "You know,
I wonder what my psoas muscle is?"

00:14:14.322 --> 00:14:16.299
So you can click on things and remove it.

00:14:16.323 --> 00:14:19.300
And I saw, "Aha! That's the kidney
and the psoas muscle."

00:14:19.324 --> 00:14:23.285
I was rotating it in 3D
and saying, "I understand now."

00:14:23.309 --> 00:14:26.244
And then I realized
it reminded me of Google Earth,

00:14:26.268 --> 00:14:28.581
where you can fly to any address.

00:14:29.045 --> 00:14:34.373
And I thought, "Why not take this
and connect it to my digital scan data

00:14:34.397 --> 00:14:36.681
and have Google Earth for my body?"

00:14:37.306 --> 00:14:39.426
What did Google come out with this year?

00:14:39.450 --> 00:14:41.454
Now there's Google Body browser.

00:14:43.758 --> 00:14:45.735
But you see, it's still generic.

00:14:45.759 --> 00:14:47.639
It's not my data.

00:14:47.663 --> 00:14:50.737
But if we can get that data
out from behind the dam

00:14:50.761 --> 00:14:53.738
so software innovators can pounce on it

00:14:53.762 --> 00:14:56.038
the way software innovators like to do,

00:14:56.062 --> 00:14:58.248
who knows what we'll be able
to come up with.

00:14:58.272 --> 00:14:59.423
One final story.

00:14:59.447 --> 00:15:04.022
This is Kelly Young, a rheumatoid
arthritis patient from Florida.

00:15:04.998 --> 00:15:08.517
This is a live story,
unfolding just in the last few weeks.

00:15:08.541 --> 00:15:14.085
RA patients, as they call themselves...
Her blog is "RA Warrior"...

00:15:14.109 --> 00:15:15.466
Have a big problem,

00:15:15.490 --> 00:15:18.268
because 40 percent of them
have no visible symptoms.

00:15:18.750 --> 00:15:21.808
And that makes it really hard
to tell how the disease is going,

00:15:21.832 --> 00:15:24.989
and some doctors think,
"Yeah right, you're really in pain."

00:15:25.013 --> 00:15:27.726
Well, she found,
through her online research,

00:15:27.750 --> 00:15:31.138
a nuclear bone scan
that's usually used for cancer,

00:15:31.162 --> 00:15:34.434
but it can also reveal inflammation.

00:15:34.975 --> 00:15:38.885
And she saw that
if there is no inflammation,

00:15:38.909 --> 00:15:41.369
then the scan is a uniform gray.

00:15:41.393 --> 00:15:43.587
So she took it.

00:15:43.612 --> 00:15:47.893
And the radiologist's report
said, "No cancer found."

00:15:47.917 --> 00:15:50.595
Well, that's not what
he was supposed to do with it.

00:15:50.620 --> 00:15:53.940
So she wanted to have it read again,

00:15:53.965 --> 00:15:55.826
and her doctor fired her.

00:15:55.850 --> 00:15:57.733
She pulled up the CD.

00:15:57.757 --> 00:16:01.464
He said, "If you don't want to follow
my instructions, go away."

00:16:02.059 --> 00:16:04.826
So she pulled up the CD
of the scan images,

00:16:04.850 --> 00:16:06.826
and look at all those hot spots.

00:16:06.850 --> 00:16:09.826
And she's now actively engaged on her blog

00:16:09.850 --> 00:16:12.645
in looking for assistance
in getting better care.

00:16:14.360 --> 00:16:17.152
See, that is an empowered
patient... no medical training.

00:16:17.176 --> 00:16:19.147
We are, you are,

00:16:19.171 --> 00:16:21.866
the most underused
resource in health care.

00:16:21.890 --> 00:16:23.406
What she was able to do

00:16:23.430 --> 00:16:26.172
was because she had access
to the raw data.

00:16:26.196 --> 00:16:27.568
How big a deal was this?

00:16:27.592 --> 00:16:29.338
Well at TED2009,

00:16:29.362 --> 00:16:32.636
Tim Berners-Lee himself,
inventor of the Web,

00:16:32.660 --> 00:16:35.637
gave a talk where he said
the next big thing

00:16:35.661 --> 00:16:40.336
is not to have your browser find
other people's articles about the data,

00:16:40.360 --> 00:16:41.542
but the raw data.

00:16:41.566 --> 00:16:44.336
And he got them chanting
by the end of the talk,

00:16:44.360 --> 00:16:48.027
"Raw data now! Raw data now!"

00:16:48.051 --> 00:16:49.565
And I ask you,

00:16:49.589 --> 00:16:52.305
three words, please,
to improve health care:

00:16:53.267 --> 00:16:55.244
Let patients help!

00:16:55.268 --> 00:16:56.982
Let patients help!

00:16:57.006 --> 00:16:58.861
Let patients help!

00:16:58.885 --> 00:17:00.803
Let patients help!

00:17:00.827 --> 00:17:02.091
Thank you.

00:17:02.115 --> 00:17:08.883
(Applause)