Return to Video

Meet e-Patient Dave | Dave deBronkart | TEDxMaastricht

  • 0:21 - 0:23
    It's an amazing thing
  • 0:23 - 0:27
    that we're here to talk
    about the year of patients rising.
  • 0:27 - 0:29
    You heard stories earlier today
  • 0:29 - 0:32
    about patients who are taking
    control of their cases,
  • 0:32 - 0:33
    patients who are saying,
  • 0:33 - 0:35
    "You know what, I know what the odds are,
  • 0:35 - 0:37
    but I'm going to look
    for more information.
  • 0:37 - 0:41
    I'm going to define
    what the terms of my success are."
  • 0:41 - 0:45
    I'm going to be sharing with you
    how, four years ago, I almost died...
  • 0:45 - 0:48
    Found out I was, in fact,
    already almost dead...
  • 0:48 - 0:50
    And what I then found out
  • 0:50 - 0:52
    about what's called
    the e-Patient movement.
  • 0:52 - 0:54
    I'll explain what that term means.
  • 0:54 - 0:57
    I had been blogging
    under the name "Patient Dave,"
  • 0:57 - 0:58
    and when I discovered this,
  • 0:58 - 1:01
    I just renamed myself e-Patient Dave.
  • 1:01 - 1:03
    Regarding the word "patient":
  • 1:03 - 1:07
    When I first started a few years ago
    getting involved in health care
  • 1:07 - 1:09
    and attending meetings
    as just a casual observer,
  • 1:09 - 1:11
    I noticed that people
    would talk about patients
  • 1:11 - 1:14
    as if it was somebody
    who's not in the room here...
  • 1:14 - 1:15
    Somebody out there.
  • 1:15 - 1:18
    Some of our talks today,
    we still act like that.
  • 1:18 - 1:20
    But I'm here to tell you:
  • 1:20 - 1:23
    "patient" is not a third-person word.
  • 1:23 - 1:24
    All right?
  • 1:24 - 1:28
    You yourself will find
    yourself in a hospital bed...
  • 1:28 - 1:29
    Or your mother, your child...
  • 1:29 - 1:31
    There are heads nodding, people who say,
  • 1:31 - 1:33
    "Yes, I know exactly what you mean."
  • 1:33 - 1:36
    So when you hear what I'm going
    to talk about here today,
  • 1:36 - 1:39
    first of all, I want to say that I am here
  • 1:39 - 1:42
    on behalf of all the patients
    that I have ever met,
  • 1:42 - 1:43
    all the ones I haven't met.
  • 1:43 - 1:47
    This is about letting patients
    play a more active role
  • 1:47 - 1:50
    in helping health care,
    in fixing health care.
  • 1:50 - 1:52
    One of the senior doctors at my hospital,
  • 1:52 - 1:55
    Charlie Safran,
    and his colleague, Warner Slack,
  • 1:55 - 1:56
    have been saying for decades
  • 1:56 - 2:00
    that the most underutilized
    resource in all of health care
  • 2:00 - 2:01
    is the patient.
  • 2:03 - 2:06
    They have been saying that
    since the 1970s.
  • 2:06 - 2:08
    Now, I'm going to step back in history.
  • 2:08 - 2:10
    This is from July, 1969.
  • 2:10 - 2:11
    I was a freshman in college,
  • 2:11 - 2:14
    and this was when we first
    landed on the Moon.
  • 2:14 - 2:16
    And it was the first time
  • 2:16 - 2:19
    we had ever seen from another surface...
  • 2:19 - 2:21
    That's the place
    where you and I are right now,
  • 2:21 - 2:22
    where we live.
  • 2:22 - 2:24
    The world was changing.
  • 2:24 - 2:27
    It was about to change
    in ways that nobody could foresee.
  • 2:27 - 2:30
    A few weeks later, Woodstock happened.
  • 2:31 - 2:33
    Three days of fun and music.
  • 2:33 - 2:38
    Now, Sophie, earlier today,
    talked about sex, drugs and rock and roll.
  • 2:38 - 2:40
    Here, just for historical authenticity,
  • 2:40 - 2:42
    is a picture of me in that year.
  • 2:42 - 2:45
    (Laughter)
  • 2:45 - 2:47
    Yeah, the wavy hair, the blue eyes...
  • 2:47 - 2:48
    It was really something.
  • 2:48 - 2:54
    I won't say which of those activities
    I was participating in at this moment.
  • 2:56 - 3:00
    There's a TEDActive talk
    by Sebastian Wernicke -
  • 3:00 - 3:02
    he's an analytics guy,
  • 3:02 - 3:05
    and he looked at all the TEDTalks
    that had ever been done,
  • 3:05 - 3:07
    and how highly rated they were.
  • 3:07 - 3:09
    Now, any smart person
    who is trying to improve
  • 3:09 - 3:10
    looks at data, right?
  • 3:11 - 3:13
    It turns out that the most
    highly rated speakers
  • 3:13 - 3:16
    have hair that's longer than averige,
    so I just had to include that.
  • 3:16 - 3:18
    (Laughter)
  • 3:18 - 3:20
    That fall of 1969,
  • 3:20 - 3:21
    the Whole Earth Catalog came out.
  • 3:21 - 3:25
    It was a hippie journal
    of self-sufficiency.
  • 3:25 - 3:28
    We think of hippies
    of being just hedonists,
  • 3:29 - 3:32
    but there's a very strong component...
    I was in that movement...
  • 3:32 - 3:35
    A very strong component
    of being responsible for yourself.
  • 3:35 - 3:39
    This book's title's subtitle
    is "Access to Tools."
  • 3:39 - 3:41
    It talked about how to build
    your own house,
  • 3:41 - 3:44
    how to grow your own food,
    all kinds of things.
  • 3:44 - 3:45
    In the 1980s,
  • 3:45 - 3:47
    this young doctor, Tom Ferguson,
  • 3:47 - 3:50
    was the medical editor
    of the Whole Earth Catalog.
  • 3:52 - 3:56
    He saw that the great majority
    of what we do in medicine and health care
  • 3:56 - 3:58
    is taking care of ourselves.
  • 3:59 - 4:02
    In fact, he said it was 70 to 80 percent
  • 4:02 - 4:04
    of how we actually
    take care of our bodies.
  • 4:04 - 4:09
    Well, he also saw that when health care
    turns to medical care
  • 4:09 - 4:11
    because of a more serious disease,
  • 4:11 - 4:14
    the key thing that holds us back
    is access to information.
  • 4:14 - 4:17
    And when the Web came along,
    that changed everything,
  • 4:17 - 4:20
    because not only
    could we find information,
  • 4:20 - 4:23
    we could find other people like ourselves
  • 4:23 - 4:25
    who could gather,
    who could bring us information.
  • 4:25 - 4:28
    And he coined this term "e-Patients"...
  • 4:28 - 4:30
    Equipped, engaged, empowered, enabled.
  • 4:30 - 4:32
    Obviously, at this stage of life
  • 4:32 - 4:36
    he was in a somewhat more dignified
    form than he was back then.
  • 4:36 - 4:40
    Now, I was an engaged patient
    long before I ever heard of the term.
  • 4:40 - 4:43
    In 2006, I went to my doctor
    for a regular physical,
  • 4:43 - 4:45
    and I had said, "I have a sore shoulder."
  • 4:45 - 4:47
    Well, I got an X-ray,
  • 4:47 - 4:48
    and the next morning...
  • 4:49 - 4:52
    You may have noticed, those of you
    who have been through a medical crisis
  • 4:52 - 4:53
    will understand this.
  • 4:53 - 4:58
    This morning, some of the speakers
    named the date when they found out
  • 4:58 - 4:59
    about their condition.
  • 4:59 - 5:01
    For me, it was 9am
  • 5:01 - 5:04
    on January 3, 2007.
  • 5:04 - 5:07
    I was at the office; my desk was clean.
  • 5:07 - 5:10
    I had the blue partition
    carpet on the walls.
  • 5:10 - 5:12
    The phone rang and it was my doctor.
  • 5:13 - 5:16
    He said, "Dave, I pulled
    up the X-ray image
  • 5:16 - 5:18
    on the screen on the computer at home." -
  • 5:18 - 5:21
    don't you just love
    digital information flow? -
  • 5:21 - 5:23
    He said, "Your shoulder
    is going to be fine,
  • 5:23 - 5:25
    but Dave, there's something in your lung."
  • 5:25 - 5:27
    And if you look in that red oval,
  • 5:27 - 5:30
    that shadow was not supposed to be there.
  • 5:31 - 5:33
    To make a long story short -
  • 5:34 - 5:36
    we talked about it a little bit -
  • 5:36 - 5:38
    I said, "So you need me
    to get back in there?"
  • 5:38 - 5:42
    He said, "Yeah, we're going to need
    to do a CT scan of your chest."
  • 5:42 - 5:44
    In parting, I said,
    "Is there anything I should do?"
  • 5:44 - 5:46
    He said... think about this one,
  • 5:46 - 5:48
    this is the advice your doctor gives you:
  • 5:48 - 5:51
    "Just go home and have a glass
    of wine with your wife."
  • 5:54 - 5:56
    I went in for the CAT scan.
  • 5:57 - 6:00
    It turns out there were
    five of these things in both my lungs.
  • 6:00 - 6:03
    So at that point we knew
    that it was cancer.
  • 6:03 - 6:04
    We knew it wasn't lung cancer.
  • 6:05 - 6:07
    That meant it was metastasized
    from somewhere.
  • 6:08 - 6:10
    The question was, where from?
  • 6:10 - 6:13
    So I went in for an ultrasound.
  • 6:13 - 6:15
    I got to do what many women have...
  • 6:15 - 6:18
    The jelly on the belly and the, "Bzzzz!"
  • 6:19 - 6:20
    My wife came with me.
  • 6:21 - 6:22
    She's a veterinarian,
  • 6:22 - 6:24
    so she's seen lots of ultrasounds.
  • 6:24 - 6:26
    I mean, she knows I'm not a dog.
  • 6:26 - 6:28
    (Laughter)
  • 6:28 - 6:29
    What we saw -
  • 6:29 - 6:31
    This is an MRI image.
  • 6:31 - 6:33
    This is much sharper
    than an ultrasound would be.
  • 6:33 - 6:35
    What we saw in that kidney
  • 6:36 - 6:37
    was that big blob there.
  • 6:37 - 6:40
    There were actually two of these:
    one was growing out the front
  • 6:40 - 6:43
    and had already erupted
    and latched onto the bowel.
  • 6:43 - 6:46
    One was growing out the back
    and it attached to the psoas muscle,
  • 6:46 - 6:49
    which is a big muscle in the back
    that I'd never heard of,
  • 6:49 - 6:51
    but all of a sudden I cared about it.
  • 6:51 - 6:52
    (Laughter)
  • 6:52 - 6:53
    I went home.
  • 6:53 - 6:54
    Now, I've been Googling...
  • 6:54 - 6:57
    I've been online since 1989,
    on CompuServe.
  • 6:57 - 6:59
    I went home, and I know
    you can't read the details here;
  • 6:59 - 7:00
    that's not important.
  • 7:01 - 7:05
    My point is, I went to a respected
    medical website, WebMD,
  • 7:05 - 7:07
    because I know how to filter out junk.
  • 7:08 - 7:10
    I also found my wife online.
  • 7:11 - 7:13
    Before I met her,
  • 7:13 - 7:15
    I went through some suboptimal
    search results.
  • 7:15 - 7:17
    (Laughter)
  • 7:17 - 7:20
    So I looked for quality information.
  • 7:20 - 7:22
    There's so much about trust...
  • 7:22 - 7:24
    What sources of information can we trust?
  • 7:24 - 7:29
    Where does my body end
    and an invader start?
  • 7:29 - 7:32
    A cancer, a tumor, is something
    you grow out of your own tissue.
  • 7:32 - 7:34
    How does that happen?
  • 7:34 - 7:38
    Where does medical ability end and start?
  • 7:38 - 7:40
    Well, so what I read on WebMD:
  • 7:41 - 7:47
    "The prognosis is poor
    for progressing renal cell cancer.
  • 7:47 - 7:49
    Almost all patients are incurable."
  • 7:50 - 7:54
    I've been online long enough to know
    if I don't like the first results I get,
  • 7:54 - 7:55
    I go look for more.
  • 7:55 - 7:58
    And what I found on other websites was,
  • 7:58 - 8:00
    even by the third page of Google results:
  • 8:00 - 8:02
    "Outlook is bleak."
  • 8:03 - 8:05
    "Prognosis is grim."
  • 8:05 - 8:07
    And I'm thinking, "What the heck?"
  • 8:07 - 8:09
    I didn't feel sick at all.
  • 8:09 - 8:11
    I mean, I'd been getting
    tired in the evening,
  • 8:11 - 8:13
    but I was 56 years old, you know?
  • 8:13 - 8:15
    I was slowly losing weight,
  • 8:15 - 8:18
    but for me, that was what
    the doctor told me to do.
  • 8:19 - 8:21
    It was really something.
  • 8:21 - 8:24
    And this is the diagram
    of stage 4 kidney cancer
  • 8:24 - 8:26
    from the drug I eventually got.
  • 8:26 - 8:29
    Totally by coincidence,
    there's that thing in my lung.
  • 8:29 - 8:32
    In the left femur, the left thigh bone,
    there's another one.
  • 8:32 - 8:34
    I had one. My leg eventually snapped.
  • 8:34 - 8:37
    I fainted and landed on it, and it broke.
  • 8:37 - 8:39
    There's one in the skull,
  • 8:39 - 8:41
    and then for good measure,
    I had these other tumors,
  • 8:41 - 8:43
    including, by the time
    my treatment started,
  • 8:43 - 8:45
    one was growing out of my tongue.
  • 8:45 - 8:47
    I had kidney cancer
    growing out of my tongue.
  • 8:47 - 8:48
    And what I read
  • 8:48 - 8:51
    was that my median survival was 24 weeks.
  • 8:51 - 8:53
    This was bad.
  • 8:53 - 8:55
    I was facing the grave.
  • 8:55 - 8:58
    I thought, "What's my mother's face
    going to look like
  • 8:58 - 8:59
    on the day of my funeral?"
  • 9:00 - 9:05
    I had to sit down with my daughter
    and say, "Here's the situation."
  • 9:05 - 9:07
    Her boyfriend was with her.
  • 9:07 - 9:09
    I said, "I don't want you guys
    to get married prematurely,
  • 9:09 - 9:12
    just so you can do it
    while Dad's still alive."
  • 9:13 - 9:15
    It's really serious.
  • 9:16 - 9:19
    If you wonder why patients
    are motivated and want to help,
  • 9:19 - 9:20
    think about this.
  • 9:20 - 9:24
    Well, my doctor prescribed
    a patient community, ACOR.org,
  • 9:24 - 9:28
    a network of cancer patients,
    of all amazing things.
  • 9:28 - 9:30
    Very quickly they told me,
  • 9:30 - 9:32
    "Kidney cancer is an uncommon disease.
  • 9:32 - 9:34
    Get yourself to a specialist center.
  • 9:34 - 9:37
    There is no cure, but there's something
    that sometimes works...
  • 9:37 - 9:38
    It usually doesn't...
  • 9:38 - 9:40
    Called high-dosage interleukin.
  • 9:40 - 9:42
    Most hospitals don't offer it,
  • 9:42 - 9:44
    so they won't even tell you it exists.
  • 9:44 - 9:46
    Don't let them give you
    anything else first.
  • 9:46 - 9:50
    And by the way, here are four doctors
    in your part of the United States
  • 9:50 - 9:52
    who offer it, and their phone numbers."
  • 9:52 - 9:54
    How amazing is that?
  • 9:54 - 9:56
    (Applause)
  • 9:56 - 9:58
    Here's the thing:
  • 9:58 - 9:59
    Here we are, four years later...
  • 9:59 - 10:03
    You can't find a website
    that gives patients that information.
  • 10:03 - 10:05
    Government-approved,
    American Cancer Society,
  • 10:05 - 10:08
    but patients know
    what patients want to know.
  • 10:09 - 10:12
    It's the power of patient networks.
  • 10:12 - 10:15
    This amazing substance...
    Again, I mentioned:
  • 10:15 - 10:16
    Where does my body end?
  • 10:16 - 10:19
    My oncologist and I talk a lot these days
  • 10:19 - 10:21
    because I try to keep my talks
    technically accurate.
  • 10:21 - 10:26
    And he said, "You know, the immune
    system is good at detecting invaders,
  • 10:26 - 10:29
    bacteria coming from outside,
  • 10:29 - 10:31
    but when it's your own tissue
    that you've grown,
  • 10:31 - 10:33
    it's a whole different thing."
  • 10:33 - 10:36
    And I went through
    a mental exercise, actually,
  • 10:36 - 10:41
    because I started a patient support
    community of my own on a website,
  • 10:41 - 10:44
    and one of my friends...
    One of my relatives, actually... said,
  • 10:44 - 10:45
    "Look, Dave, who grew this thing?
  • 10:47 - 10:51
    Are you going to set yourself up
    as mentally attacking yourself?"
  • 10:51 - 10:53
    So we went into it.
  • 10:53 - 10:55
    The story of how all that
    happened is in the book.
  • 10:56 - 10:58
    Anyway, this is the way
    the numbers unfolded.
  • 10:58 - 11:01
    Me being me, I put the numbers
    from my hospital's website,
  • 11:01 - 11:02
    for my tumor sizes,
  • 11:02 - 11:03
    into a spreadsheet.
  • 11:03 - 11:05
    Don't worry about the numbers.
  • 11:05 - 11:07
    You see, that's the immune system.
  • 11:07 - 11:09
    Amazing thing, those two yellow lines
  • 11:09 - 11:13
    are where I got the two doses
    of interleukin two months apart.
  • 11:13 - 11:16
    And look at how the tumor sizes
    plummeted in between.
  • 11:17 - 11:18
    Just incredible.
  • 11:18 - 11:21
    Who knows what we'll be able to do
    when we learn to make more use of it?
  • 11:21 - 11:24
    The punch line is that a year
    and a half later,
  • 11:24 - 11:28
    I was there when this magnificent
    young woman, my daughter,
  • 11:28 - 11:29
    got married.
  • 11:29 - 11:31
    And when she came down those steps,
  • 11:32 - 11:34
    and it was just her and me
    for that moment,
  • 11:34 - 11:37
    I was so glad that she didn't have
    to say to her mother,
  • 11:37 - 11:39
    "I wish Dad could have been here."
  • 11:39 - 11:43
    And this is what we're doing
    when we make health care better.
  • 11:43 - 11:46
    Now, I want to talk briefly
    about a couple of other patients
  • 11:46 - 11:49
    who are doing everything
    in their power to improve health care.
  • 11:49 - 11:51
    This is Regina Holliday,
  • 11:51 - 11:55
    a painter in Washington DC,
    whose husband died of kidney cancer
  • 11:55 - 11:57
    a year after my disease.
  • 11:57 - 11:58
    She's painting, here, a mural
  • 11:58 - 12:01
    of his horrible
    final weeks in the hospital.
  • 12:01 - 12:04
    One of the things that she discovered
  • 12:04 - 12:08
    was that her husband's medical record
    in this paper folder
  • 12:08 - 12:10
    was just disorganized.
  • 12:10 - 12:13
    And she thought, "You know,
    if I have a nutrition facts label
  • 12:13 - 12:15
    on the side of a cereal box,
  • 12:15 - 12:17
    why can't there be something that simple
  • 12:17 - 12:19
    telling every new nurse who comes on duty,
  • 12:19 - 12:20
    every new doctor,
  • 12:21 - 12:23
    the basics about my husband's condition?"
  • 12:23 - 12:28
    So she painted this medical facts mural
    with a nutrition label,
  • 12:28 - 12:29
    something like that,
  • 12:29 - 12:30
    in a diagram of him.
  • 12:30 - 12:34
    She then, last year, painted this diagram.
  • 12:34 - 12:36
    She studied health care like me.
  • 12:36 - 12:40
    She came to realize
    there were a lot of people
  • 12:40 - 12:42
    who'd written patient-advocate books
  • 12:42 - 12:45
    that you just don't hear
    about at medical conferences.
  • 12:45 - 12:48
    Patients are such
    an underutilized resource.
  • 12:49 - 12:50
    Well, as it said in my introduction,
  • 12:50 - 12:52
    I've gotten somewhat known for saying
  • 12:52 - 12:54
    that patients should have
    access to their data.
  • 12:54 - 12:57
    I actually said at one conference
    a couple of years ago,
  • 12:57 - 12:58
    "Give me my damn data,
  • 12:58 - 13:01
    because you people
    can't be trusted to keep it clean."
  • 13:01 - 13:04
    And here, she has our "damned" data...
  • 13:04 - 13:05
    It's a pun...
  • 13:05 - 13:08
    Which is starting to break out,
    starting to break through...
  • 13:08 - 13:10
    The water symbolizes our data.
  • 13:10 - 13:11
    And in fact,
  • 13:11 - 13:14
    I want to do a little something
    improvisational for you.
  • 13:14 - 13:18
    There's a guy on Twitter that I know,
    a health IT guy outside Boston,
  • 13:18 - 13:20
    and he wrote the e-Patient rap.
  • 13:20 - 13:22
    And it goes like this.
  • 13:22 - 13:24
    (Laughter)
  • 13:24 - 13:28
    (Beatboxing)
  • 13:28 - 13:30
    (Rapping) Gimme my damn data
  • 13:30 - 13:32
    I wanna be an e-Patient just like Dave
  • 13:32 - 13:35
    Gimme my damn data,
    'cause it's my life to save
  • 13:35 - 13:38
    (Normal voice) Now, I'm not going
    to go any further...
  • 13:38 - 13:44
    (Applause) (Cheering)
  • 13:52 - 13:54
    Well, thank you. That shot the timing.
  • 13:54 - 13:56
    (Laughter)
  • 13:56 - 13:58
    Think about the possibility.
  • 13:58 - 14:02
    Why is it that iPhones and iPads
    advance far faster
  • 14:02 - 14:04
    than the health tools
    that are available to you
  • 14:04 - 14:06
    to help take care of your family?
  • 14:07 - 14:11
    Here's a website, VisibleBody.com,
    that I stumbled across.
  • 14:11 - 14:14
    And I thought, "You know,
    I wonder what my psoas muscle is?"
  • 14:14 - 14:16
    So you can click on things and remove it.
  • 14:16 - 14:19
    And I saw, "Aha! That's the kidney
    and the psoas muscle."
  • 14:19 - 14:23
    I was rotating it in 3D
    and saying, "I understand now."
  • 14:23 - 14:26
    And then I realized
    it reminded me of Google Earth,
  • 14:26 - 14:29
    where you can fly to any address.
  • 14:29 - 14:34
    And I thought, "Why not take this
    and connect it to my digital scan data
  • 14:34 - 14:37
    and have Google Earth for my body?"
  • 14:37 - 14:39
    What did Google come out with this year?
  • 14:39 - 14:41
    Now there's Google Body browser.
  • 14:44 - 14:46
    But you see, it's still generic.
  • 14:46 - 14:48
    It's not my data.
  • 14:48 - 14:51
    But if we can get that data
    out from behind the dam
  • 14:51 - 14:54
    so software innovators can pounce on it
  • 14:54 - 14:56
    the way software innovators like to do,
  • 14:56 - 14:58
    who knows what we'll be able
    to come up with.
  • 14:58 - 14:59
    One final story.
  • 14:59 - 15:04
    This is Kelly Young, a rheumatoid
    arthritis patient from Florida.
  • 15:05 - 15:09
    This is a live story,
    unfolding just in the last few weeks.
  • 15:09 - 15:14
    RA patients, as they call themselves...
    Her blog is "RA Warrior"...
  • 15:14 - 15:15
    Have a big problem,
  • 15:15 - 15:18
    because 40 percent of them
    have no visible symptoms.
  • 15:19 - 15:22
    And that makes it really hard
    to tell how the disease is going,
  • 15:22 - 15:25
    and some doctors think,
    "Yeah right, you're really in pain."
  • 15:25 - 15:28
    Well, she found,
    through her online research,
  • 15:28 - 15:31
    a nuclear bone scan
    that's usually used for cancer,
  • 15:31 - 15:34
    but it can also reveal inflammation.
  • 15:35 - 15:39
    And she saw that
    if there is no inflammation,
  • 15:39 - 15:41
    then the scan is a uniform gray.
  • 15:41 - 15:44
    So she took it.
  • 15:44 - 15:48
    And the radiologist's report
    said, "No cancer found."
  • 15:48 - 15:51
    Well, that's not what
    he was supposed to do with it.
  • 15:51 - 15:54
    So she wanted to have it read again,
  • 15:54 - 15:56
    and her doctor fired her.
  • 15:56 - 15:58
    She pulled up the CD.
  • 15:58 - 16:01
    He said, "If you don't want to follow
    my instructions, go away."
  • 16:02 - 16:05
    So she pulled up the CD
    of the scan images,
  • 16:05 - 16:07
    and look at all those hot spots.
  • 16:07 - 16:10
    And she's now actively engaged on her blog
  • 16:10 - 16:13
    in looking for assistance
    in getting better care.
  • 16:14 - 16:17
    See, that is an empowered
    patient... no medical training.
  • 16:17 - 16:19
    We are, you are,
  • 16:19 - 16:22
    the most underused
    resource in health care.
  • 16:22 - 16:23
    What she was able to do
  • 16:23 - 16:26
    was because she had access
    to the raw data.
  • 16:26 - 16:28
    How big a deal was this?
  • 16:28 - 16:29
    Well at TED2009,
  • 16:29 - 16:33
    Tim Berners-Lee himself,
    inventor of the Web,
  • 16:33 - 16:36
    gave a talk where he said
    the next big thing
  • 16:36 - 16:40
    is not to have your browser find
    other people's articles about the data,
  • 16:40 - 16:42
    but the raw data.
  • 16:42 - 16:44
    And he got them chanting
    by the end of the talk,
  • 16:44 - 16:48
    "Raw data now! Raw data now!"
  • 16:48 - 16:50
    And I ask you,
  • 16:50 - 16:52
    three words, please,
    to improve health care:
  • 16:53 - 16:55
    Let patients help!
  • 16:55 - 16:57
    Let patients help!
  • 16:57 - 16:59
    Let patients help!
  • 16:59 - 17:01
    Let patients help!
  • 17:01 - 17:02
    Thank you.
  • 17:02 - 17:09
    (Applause)
Title:
Meet e-Patient Dave | Dave deBronkart | TEDxMaastricht
Description:

When Dave deBronkart learned he had a rare and terminal cancer, he turned to a group of fellow patients online -- and found a medical treatment that even his own doctors didn't know. It saved his life. Now he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx

more » « less
Video Language:
English
Team:
TED
Project:
TEDxTalks
Duration:
17:43

English subtitles

Revisions Compare revisions