Dave deBronkart: Meet e-Patient Dave

TED
1 Jul 201116:31

Summary

TLDREl discurso aborda el movimiento e-Patient, enfatizando la importancia de que los pacientes sean activos en su cuidado de salud. El orador comparte su experiencia personal con el cáncer y cómo la información en línea y la comunidad de pacientes lo ayudaron a encontrar tratamiento efectivo. Exhorta a la audiencia a reconocer el poder de la participación del paciente y a permitir que los pacientes tengan acceso a sus datos médicos para mejorar la atención médica.

Takeaways

  • 🌟 El año de los pacientes emergentes es un momento en el que se reconoce la importancia de la participación activa de los pacientes en su cuidado de salud.
  • 🗣️ Los pacientes están tomando control de sus propias historias clínicas, buscando información adicional y definiendo sus propios términos de éxito.
  • 🗣️ El movimiento e-Patient promueve la equipación, participación, empoderamiento y habilitación de los pacientes a través del acceso a la información en línea.
  • 🕰️ El concepto de e-Patient fue acuñado por Tom Ferguson en los años 80, quien vio la mayoría del cuidado de la salud como auto-atención.
  • 🌐 La llegada de la Web transformó la forma en que los pacientes acceden a la información y se conectan con otros pacientes para compartir experiencias y conocimientos.
  • 🏥 La importancia de que los pacientes tengan acceso a sus datos médicos y sean parte del proceso de toma de decisiones en su tratamiento.
  • 💊 La historia personal del orador, conocido como e-Patient Dave, demuestra la diferencia que puede hacer la participación activa del paciente en su tratamiento al encontrar una terapia efectiva para su cáncer de riñón.
  • 🎨 La artista Regina Holliday, cuya historia personal la llevó a crear obras que resaltan la necesidad de acceso a información clara y organizada sobre los pacientes.
  • 📊 La importancia de los datos médicos en bruto y cómo su acceso puede mejorar significativamente el cuidado de los pacientes, permitiendo innovaciones en herramientas de salud.
  • 🌐 La comparación con la tecnología de consumo, como los dispositivos iOS, resalta la brecha entre la velocidad de innovación en el sector de la tecnología y en las herramientas de salud.
  • 🙌 El llamado a las instituciones de salud para permitir que los pacientes ayuden a mejorar el sistema de atención médica, reconociendo su papel crucial en el proceso.

Q & A

  • ¿Qué es el movimiento e-Patient y cómo se relaciona con la historia del orador?

    -El movimiento e-Patient se refiere a pacientes equipados, comprometidos, empoderados y habilitados para participar activamente en su propia atención médica. El orador descubrió este movimiento después de casi morir y renombró su blog de 'Patient Dave' a 'e-Patient Dave', asumiendo un papel activo en su tratamiento y promoción de la participación del paciente en la atención médica.

  • ¿Qué le sucedió al orador cuatro años antes de dar esta charla?

    -Cuatro años antes de la charla, el orador se encontró en una situación de vida o muerte al descubrir que tenía un tumor en el riñón que se había metastasizado a ambos pulmones, lo que lo llevó al borde de la muerte. Este evento lo llevó a explorar y adoptar el movimiento e-Patient.

  • ¿Qué importancia tuvo el acceso a la información en la historia del orador con cáncer de riñón?

    -El acceso a la información fue crucial para el orador, ya que después de recibir un diagnóstico de cáncer de riñón con mal pronóstico, utilizó su habilidad para buscar en línea para encontrar tratamientos alternativos y comunidades de pacientes que le ayudaron a encontrar un tratamiento poco convencional que eventualmente le permitió sobrevivir.

  • ¿Qué es ACOR.org y cómo ayudó al orador en su lucha contra el cáncer?

    -ACOR.org es una red de pacientes con cáncer que proporciona apoyo y recursos. Para el orador, este sitio web fue un punto de partida para encontrar información sobre un tratamiento poco convencional llamado interleukina de alta dosis, que eventualmente le fue administrada y contribuyó a su recuperación.

  • ¿Cómo se describe el papel del paciente en la atención médica según el discurso del orador?

    -El orador describe al paciente como el recurso más subutilizado en la atención médica, enfatizando la importancia de que los pacientes tomen un papel más activo en su tratamiento y en la mejora del sistema de atención médica.

  • ¿Qué es el término 'Whole Earth Catalog' y cómo se relaciona con el movimiento e-Patient?

    -El 'Whole Earth Catalog' fue un periódico hippie de autosuficiencia que promovió la responsabilidad personal y el acceso a herramientas para cuidarse a uno mismo. Este concepto se relaciona con el movimiento e-Patient, ya que enfatiza la importancia de la auto-atención y el acceso a información para la salud, aspectos claves del enfoque e-Patient.

  • ¿Qué es el tratamiento de alta dosis de interleukina y por qué fue importante para el orador?

    -El tratamiento de alta dosis de interleukina es una terapia poco convencional que se utiliza para tratar ciertos tipos de cáncer. Fue importante para el orador porque, a pesar de que la mayoría de los hospitales no lo ofrecen, resultó ser efectivo en su caso, permitiéndole sobrevivir a un cáncer de riñón avanzado.

  • ¿Qué es la 'Google Body browser' y cómo se relaciona con la idea del orador de tener acceso a los datos médicos personales?

    -La 'Google Body browser' es una herramienta de visualización 3D que permite explorar el cuerpo humano en detalle. El orador sugiere que si los pacientes tuvieran acceso a sus datos médicos en forma de datos crudos, podrían integrarse con herramientas como la 'Google Body browser' para una mejor comprensión y manejo de sus condiciones médicas.

  • ¿Qué es el concepto de 'datos crudos' en el contexto de la atención médica y por qué es importante según el orador?

    -El concepto de 'datos crudos' en la atención médica se refiere a la disponibilidad de los datos médicos sin procesar o sin interpretar directamente a los pacientes y a los profesionales de la salud. El orador argumenta que el acceso a estos datos es crucial para mejorar la toma de decisiones en la atención médica y para innovar en herramientas de salud digital.

  • ¿Qué historia comparte el orador sobre Kelly Young y cómo ejemplifica la importancia de los pacientes estar informados y activos en su cuidado?

    -Kelly Young es una paciente con artritis reumatoide que, al no encontrar respuestas en su doctor, decidió investigar por su cuenta y descubrió una prueba de escaneo óseo nuclear que reveló la inflamación subyacente de su condición. Esta historia demuestra la importancia de que los pacientes sean activos en buscar información y participen en su tratamiento, ya que pueden descubrir pruebas y tratamientos que no son ampliamente conocidos.

Outlines

00:00

😀 El Año de los Pacientes Emergentes

El orador comparte su experiencia personal y cómo el movimiento e-Patient ha cambiado su enfoque en la atención médica. Habla de cómo los pacientes están asumiendo un papel más activo en su cuidado de salud, buscando información y definiendo sus propias metas de éxito. El orador menciona su propia lucha contra una enfermedad grave y cómo la tecnología y la información en línea le ayudaron a sobrevivir y a cambiar su perspectiva sobre el papel del paciente en el sistema de salud.

05:04

😷 La Detección de un Cáncer y la Búsqueda de Informes Médicos

El orador describe su proceso de diagnóstico después de encontrar un tumor en su pulmón y luego descubrir que tenía cáncer de riñón en etapa terminal. Explica cómo la información en línea, aunque a veces desalentadora, le ayudó a encontrar tratamientos poco convencionales y a conectarse con comunidades de pacientes. Destaca la importancia de la información confiable y cómo la comunidad de pacientes puede proporcionar consejos y recursos que a menudo faltan en el sistema de atención médica convencional.

10:05

💪 El Poder de los Pacientes Activos y la Innovación en la Salud

El orador narra cómo su tratamiento con interleukina, una terapia poco común, tuvo un impacto significativo en su lucha contra el cáncer. Muestra cómo la participación activa de los pacientes, con acceso a sus datos médicos y la capacidad de interactuar con otras personas con condiciones similares, puede mejorar drásticamente los resultados del tratamiento. También introduce a otros pacientes activistas que están trabajando para mejorar el sistema de salud, como Regina Holliday, quien aboga por una mayor transparencia en los registros médicos, y Kelly Young, que utiliza tecnología para demostrar la gravedad de su condición.

15:08

🌐 Llamado a Acción: Dar a los Pacientes Acceso a sus Datos Médicos

El orador hace un llamado a la acción para que los pacientes tengan acceso a sus datos médicos en bruto, argumentando que esto podría revolucionar la atención médica al permitir la innovación y la personalización del tratamiento. Comparte su propia experiencia con herramientas interactivas en línea y sugiere que si los pacientes tuvieran control total de sus datos, podrían contribuir de manera significativa a la mejora del sistema de salud. Finalmente, el orador insta a la audiencia a reconocer el valor de la participación activa de los pacientes y a permitirles ayudar a mejorar el sistema de atención médica.

Mindmap

Keywords

💡e-Patient

Un e-Patient es un paciente que utiliza la tecnología de la información para ser más informado y activo en su cuidado de salud. En el vídeo, el orador describe cómo se convirtió en 'e-Patient Dave' después de enfrentar su propia enfermedad y cómo los e-Patients están equipados, comprometidos, empoderados y habilitados para mejorar su propia salud. Este término es central en el mensaje del vídeo, que promueve la participación activa de los pacientes en su tratamiento.

💡Paciente activo

Un paciente activo es alguien que toma el control de su propia salud y tratamiento, buscando información y definiendo sus propias metas de éxito. En el vídeo, el orador aboga por un papel más activo para los pacientes en la mejora del sistema de atención médica, utilizando su experiencia personal como ejemplo de cómo un paciente activo puede influir en su propio tratamiento y resultados.

💡Movimiento e-Patient

El movimiento e-Patient es un esfuerzo para promover la participación de los pacientes en su cuidado de salud a través de la educación, la comunicación y el uso de la tecnología. El orador menciona cómo este movimiento ha evolucionado y cómo él mismo se identifica con él, cambiando su apodo de 'Patient Dave' a 'e-Patient Dave'.

💡Cuidado de la salud

El cuidado de la salud es el proceso de mantener, mejorar o restaurar la salud a través de la prevención, diagnóstico, tratamiento y rehabilitación. En el vídeo, el orador habla sobre cómo los pacientes pueden ser una 'recurso subutilizado' en el cuidado de la salud y cómo su participación activa puede mejorar los resultados y la experiencia del paciente.

💡Recursos del paciente

Los recursos del paciente se refieren a la información, habilidades y apoyos que un paciente puede utilizar para manejar su propia salud. El orador destaca la importancia de que los pacientes tengan acceso a sus propios datos médicos y sean activos en la toma de decisiones sobre su cuidado, utilizando su historia personal como ejemplo de cómo los recursos del paciente pueden ser cruciales para el éxito del tratamiento.

💡Tom Ferguson

Tom Ferguson fue un médico pionero en el movimiento e-Patient y el editor médico de la Whole Earth Catalog. En el vídeo, se menciona cómo Ferguson vio la importancia del auto-cuidado en la atención médica y cómo la llegada de la Web abrió nuevas oportunidades para que los pacientes accedieran a información y se auto-organizaran.

💡Cáncer de riñón

El cáncer de riñón es un tipo de cáncer que comienza en las células del riñón. En el vídeo, el orador comparte su experiencia personal de lidiar con este tipo de cáncer, incluyendo su diagnóstico y el tratamiento que recibió, que incluyó un enfoque poco convencional basado en la información que él mismo investigó y encontró en línea.

💡Diagnóstico

El diagnóstico es el proceso por el cual se identifica una enfermedad o condición médica basándose en los síntomas, la historia clínica y los exámenes. En el vídeo, el orador describe su propio diagnóstico de cáncer de riñón y cómo la información que él mismo investigó influyó en su tratamiento y perspectiva.

💡Auto-cuidado

El auto-cuidado se refiere a las actividades que las personas realizan para mantener o mejorar su propia salud. En el vídeo, se discute cómo el auto-cuidado es una parte integral de la atención médica y cómo los pacientes activos, como el orador, pueden tener un impacto significativo en sus resultados de salud al ser conscientes y proactivos en su cuidado.

💡Datos médicos

Los datos médicos son información detallada sobre la salud de una persona, incluyendo diagnósticos, tratamientos, exámenes y resultados. En el vídeo, el orador aboga por el acceso de los pacientes a sus propios datos médicos, argumentando que esto puede mejorar la calidad de los cuidados y permitir a los pacientes ser más activos en su tratamiento.

Highlights

Patients are taking control of their cases and defining their own success.

Introduction of the e-Patient movement: equipped, engaged, empowered, and enabled patients.

Doctors have been underutilizing the potential of patients in healthcare since the 1970s.

The most underutilized resource in healthcare is the patient.

Dave's personal story of surviving kidney cancer and becoming an engaged patient.

The significance of patient communities, such as ACOR.org, which helped guide Dave’s treatment.

The critical role of access to information in empowering patients.

Dave’s rapid recovery with high-dose interleukin treatment despite a grim prognosis.

Regina Holliday’s mural advocating for more organized and accessible medical records.

Patients are motivated to improve healthcare through shared experiences and active involvement.

Kelly Young’s advocacy for better care for rheumatoid arthritis patients and the power of raw data.

Tim Berners-Lee’s call for ‘raw data now’ to transform access to information.

The need for better technological tools, like Google Body, to empower patients with personalized medical data.

Empowering patients by giving them access to their medical data and involving them in healthcare.

The call to action: 'Let patients help' to improve healthcare globally.

Transcripts

play00:16

It's an amazing thing

play00:17

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

play00:22

You heard stories earlier today

play00:24

about patients who are taking control of their cases,

play00:27

patients who are saying,

play00:28

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

play00:30

but I'm going to look for more information.

play00:32

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

play00:36

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

play00:40

found out I was, in fact, already almost dead --

play00:42

and what I then found out

play00:45

about what's called the e-Patient movement.

play00:47

I'll explain what that term means.

play00:49

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

play00:51

and when I discovered this,

play00:53

I just renamed myself e-Patient Dave.

play00:55

Regarding the word "patient":

play00:57

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

play01:01

and attending meetings as just a casual observer,

play01:04

I noticed that people would talk about patients

play01:06

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

play01:08

somebody out there.

play01:10

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

play01:12

But I'm here to tell you:

play01:14

"patient" is not a third-person word.

play01:18

All right?

play01:19

You yourself will find yourself in a hospital bed --

play01:22

or your mother, your child --

play01:24

there are heads nodding, people who say,

play01:26

"Yes, I know exactly what you mean."

play01:27

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

play01:31

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

play01:34

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

play01:36

all the ones I haven't met.

play01:38

This is about letting patients play a more active role

play01:42

in helping health care, in fixing health care.

play01:45

One of the senior doctors at my hospital,

play01:47

Charlie Safran, and his colleague, Warner Slack,

play01:49

have been saying for decades

play01:51

that the most underutilized resource in all of health care

play01:55

is the patient.

play01:56

They have been saying that since the 1970s.

play01:59

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

play02:01

This is from July, 1969.

play02:03

I was a freshman in college,

play02:05

and this was when we first landed on the Moon.

play02:08

And it was the first time

play02:09

we had ever seen from another surface --

play02:12

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

play02:14

where we live.

play02:15

The world was changing.

play02:17

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

play02:20

A few weeks later, Woodstock happened.

play02:24

Three days of fun and music.

play02:26

Here, just for historical authenticity,

play02:28

is a picture of me in that year.

play02:30

(Laughter)

play02:33

Yeah, the wavy hair, the blue eyes --

play02:35

it was really something.

play02:37

That fall of 1969,

play02:39

the Whole Earth Catalog came out.

play02:41

It was a hippie journal of self-sufficiency.

play02:45

We think of hippies of being just hedonists,

play02:48

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

play02:51

a very strong component of being responsible for yourself.

play02:54

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

play02:58

It talked about how to build your own house,

play03:00

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

play03:03

In the 1980s,

play03:04

this young doctor, Tom Ferguson,

play03:06

was the medical editor of the Whole Earth Catalog.

play03:09

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

play03:14

is taking care of ourselves.

play03:16

In fact, he said it was 70 to 80 percent

play03:18

of how we actually take care of our bodies.

play03:20

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

play03:25

because of a more serious disease,

play03:27

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

play03:30

And when the Web came along, that changed everything,

play03:34

because not only could we find information,

play03:36

we could find other people like ourselves

play03:39

who could gather, who could bring us information.

play03:42

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

play03:44

equipped, engaged, empowered, enabled.

play03:47

Obviously, at this stage of life

play03:48

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

play03:52

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

play03:56

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

play03:59

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

play04:02

Well, I got an X-ray,

play04:03

and the next morning --

play04:05

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

play04:08

will understand this.

play04:10

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

play04:14

about their condition.

play04:15

For me, it was 9am

play04:18

on January 3, 2007.

play04:21

I was at the office; my desk was clean.

play04:23

I had the blue partition carpet on the walls.

play04:27

The phone rang and it was my doctor.

play04:30

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

play04:33

on the screen on the computer at home."

play04:35

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

play04:37

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

play04:39

And if you look in that red oval,

play04:41

that shadow was not supposed to be there.

play04:45

To make a long story short,

play04:47

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

play04:49

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

play04:52

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

play04:55

He said -- think about this one,

play04:57

this is the advice your doctor gives you:

play04:59

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

play05:04

I went in for the CAT scan.

play05:07

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

play05:10

So at that point we knew that it was cancer.

play05:12

We knew it wasn't lung cancer.

play05:14

That meant it was metastasized from somewhere.

play05:18

The question was, where from?

play05:20

So I went in for an ultrasound.

play05:23

I got to do what many women have --

play05:25

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

play05:29

My wife came with me.

play05:31

She's a veterinarian,

play05:32

so she's seen lots of ultrasounds.

play05:34

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

play05:36

(Laughter)

play05:37

This is an MRI image.

play05:40

This is much sharper than an ultrasound would be.

play05:43

What we saw in that kidney

play05:46

was that big blob there.

play05:47

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

play05:50

and had already erupted and latched onto the bowel.

play05:53

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

play05:56

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

play05:59

but all of a sudden I cared about it.

play06:01

(Laughter)

play06:02

I went home.

play06:03

Now, I've been Googling --

play06:04

I've been online since 1989, on CompuServe.

play06:07

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

play06:09

that's not important.

play06:10

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

play06:15

because I know how to filter out junk.

play06:17

I also found my wife online.

play06:19

Before I met her,

play06:21

I went through some suboptimal search results.

play06:24

(Laughter)

play06:25

So I looked for quality information.

play06:28

There's so much about trust --

play06:30

what sources of information can we trust?

play06:33

Where does my body end and an invader start?

play06:37

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

play06:41

How does that happen?

play06:42

Where does medical ability end and start?

play06:46

Well, so what I read on WebMD:

play06:49

"The prognosis is poor for progressing renal cell cancer.

play06:54

Almost all patients are incurable."

play06:57

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

play07:01

I go look for more.

play07:02

And what I found on other websites was,

play07:05

even by the third page of Google results:

play07:07

"Outlook is bleak."

play07:09

"Prognosis is grim."

play07:12

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

play07:14

I didn't feel sick at all.

play07:16

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

play07:18

but I was 56 years old, you know?

play07:20

I was slowly losing weight,

play07:22

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

play07:26

It was really something.

play07:27

And this is the diagram of stage 4 kidney cancer

play07:31

from the drug I eventually got.

play07:32

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

play07:36

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

play07:39

I had one. My leg eventually snapped.

play07:41

I fainted and landed on it, and it broke.

play07:44

There's one in the skull,

play07:45

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

play07:48

including, by the time my treatment started,

play07:50

one was growing out of my tongue.

play07:51

I had kidney cancer growing out of my tongue.

play07:53

And what I read

play07:55

was that my median survival was 24 weeks.

play07:58

This was bad.

play07:59

I was facing the grave.

play08:02

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

play08:04

on the day of my funeral?"

play08:06

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

play08:12

Her boyfriend was with her.

play08:13

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

play08:16

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

play08:20

It's really serious.

play08:21

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

play08:25

think about this.

play08:26

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

play08:30

a network of cancer patients, of all amazing things.

play08:34

Very quickly they told me,

play08:36

"Kidney cancer is an uncommon disease.

play08:38

Get yourself to a specialist center.

play08:40

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

play08:43

it usually doesn't --

play08:44

called high-dosage interleukin.

play08:46

Most hospitals don't offer it,

play08:48

so they won't even tell you it exists.

play08:50

Don't let them give you anything else first.

play08:52

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

play08:56

who offer it, and their phone numbers."

play08:58

How amazing is that?

play09:00

(Applause)

play09:03

Here's the thing:

play09:04

Here we are, four years later --

play09:06

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

play09:09

Government-approved, American Cancer Society,

play09:12

but patients know what patients want to know.

play09:16

It's the power of patient networks.

play09:18

This amazing substance -- again, I mentioned:

play09:22

Where does my body end?

play09:23

My oncologist and I talk a lot these days

play09:25

because I try to keep my talks technically accurate.

play09:28

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

play09:33

bacteria coming from outside,

play09:35

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

play09:38

it's a whole different thing."

play09:39

And I went through a mental exercise, actually,

play09:42

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

play09:47

and one of my friends -- one of my relatives, actually -- said,

play09:50

"Look, Dave, who grew this thing?

play09:54

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

play09:58

So we went into it.

play09:59

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

play10:02

Anyway, this is the way the numbers unfolded.

play10:05

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

play10:08

for my tumor sizes,

play10:09

into a spreadsheet.

play10:10

Don't worry about the numbers.

play10:12

You see, that's the immune system.

play10:13

Amazing thing, those two yellow lines

play10:15

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

play10:20

And look at how the tumor sizes plummeted in between.

play10:23

Just incredible.

play10:24

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

play10:28

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

play10:30

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

play10:34

got married.

play10:35

And when she came down those steps,

play10:38

and it was just her and me for that moment,

play10:40

I was so glad that she didn't have to say to her mother,

play10:43

"I wish Dad could have been here."

play10:45

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

play10:49

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

play10:52

who are doing everything in their power to improve health care.

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This is Regina Holliday,

play10:57

a painter in Washington DC, whose husband died of kidney cancer

play11:01

a year after my disease.

play11:03

She's painting, here, a mural

play11:05

of his horrible final weeks in the hospital.

play11:08

One of the things that she discovered

play11:10

was that her husband's medical record in this paper folder

play11:14

was just disorganized.

play11:16

And she thought, "You know, if I have a nutrition facts label

play11:19

on the side of a cereal box,

play11:21

why can't there be something that simple

play11:23

telling every new nurse who comes on duty,

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every new doctor,

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the basics about my husband's condition?"

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So she painted this medical facts mural with a nutrition label,

play11:34

something like that,

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in a diagram of him.

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She then, last year, painted this diagram.

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She studied health care like me.

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She came to realize there were a lot of people

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who'd written patient-advocate books

play11:46

that you just don't hear about at medical conferences.

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Patients are such an underutilized resource.

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Well, as it said in my introduction,

play11:54

I've gotten somewhat known for saying

play11:56

that patients should have access to their data.

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I actually said at one conference a couple of years ago,

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"Give me my damn data,

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because you people can't be trusted to keep it clean."

play12:05

And here, she has our "damned" data --

play12:08

it's a pun --

play12:09

which is starting to break out, starting to break through --

play12:12

the water symbolizes our data.

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And in fact,

play12:15

I want to do a little something improvisational for you.

play12:18

There's a guy on Twitter that I know, a health IT guy outside Boston,

play12:22

and he wrote the e-Patient rap.

play12:24

And it goes like this.

play12:26

(Laughter)

play12:28

(Beatboxing)

play12:32

(Rapping) Gimme my damn data

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I wanna be an e-Patient just like Dave

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Gimme my damn data, 'cause it's my life to save

play12:39

(Normal voice) Now, I'm not going to go any further --

play12:41

(Applause) (Cheering)

play12:56

Well, thank you. That shot the timing.

play12:58

(Laughter)

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Think about the possibility.

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Why is it that iPhones and iPads advance far faster

play13:06

than the health tools that are available to you

play13:08

to help take care of your family?

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Here's a website, VisibleBody.com, that I stumbled across.

play13:14

And I thought, "You know, I wonder what my psoas muscle is?"

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So you can click on things and remove it.

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And I saw, "Aha! That's the kidney and the psoas muscle."

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I was rotating it in 3D and saying, "I understand now."

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And then I realized it reminded me of Google Earth,

play13:29

where you can fly to any address.

play13:32

And I thought, "Why not take this and connect it to my digital scan data

play13:37

and have Google Earth for my body?"

play13:40

What did Google come out with this year?

play13:43

Now there's Google Body browser.

play13:45

But you see, it's still generic.

play13:47

It's not my data.

play13:49

But if we can get that data out from behind the dam

play13:52

so software innovators can pounce on it

play13:55

the way software innovators like to do,

play13:57

who knows what we'll be able to come up with.

play14:00

One final story.

play14:01

This is Kelly Young, a rheumatoid arthritis patient from Florida.

play14:06

This is a live story, unfolding just in the last few weeks.

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RA patients, as they call themselves -- her blog is "RA Warrior" --

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have a big problem,

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because 40 percent of them have no visible symptoms.

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And that makes it really hard to tell how the disease is going,

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and some doctors think, "Yeah right, you're really in pain."

play14:26

Well, she found, through her online research,

play14:29

a nuclear bone scan that's usually used for cancer,

play14:32

but it can also reveal inflammation.

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And she saw that if there is no inflammation,

play14:39

then the scan is a uniform gray.

play14:41

So she took it.

play14:42

And the radiologist's report said, "No cancer found."

play14:47

Well, that's not what he was supposed to do with it.

play14:49

So she wanted to have it read again,

play14:52

and her doctor fired her.

play14:54

She pulled up the CD.

play14:55

He said, "If you don't want to follow my instructions, go away."

play15:00

So she pulled up the CD of the scan images,

play15:03

and look at all those hot spots.

play15:05

And she's now actively engaged on her blog

play15:08

in looking for assistance in getting better care.

play15:11

See, that is an empowered patient -- no medical training.

play15:14

We are, you are,

play15:16

the most underused resource in health care.

play15:18

What she was able to do

play15:20

was because she had access to the raw data.

play15:23

How big a deal was this?

play15:24

Well at TED2009,

play15:26

Tim Berners-Lee himself, inventor of the Web,

play15:29

gave a talk where he said the next big thing

play15:32

is not to have your browser find other people's articles about the data,

play15:37

but the raw data.

play15:38

And he got them chanting by the end of the talk,

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"Raw data now! Raw data now!"

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And I ask you,

play15:46

three words, please, to improve health care:

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Let patients help!

play15:51

Let patients help!

play15:53

Let patients help!

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Let patients help!

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Thank you.

play15:58

(Applause)

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For all the patients around the world watching this on the Webcast,

play16:20

God bless you, everyone. Let patients help.

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Host: And bless yourself. Thank you very much.

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