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“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected] What e-Patients Want and Why They Need to Be Empowered

What e-Patients Want and Why They Need To Be Empowered

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“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]

What e-Patients Want and Why They Need

to Be Empowered

TEDx Maastricht, 2011

This is the year

of patients

rising.

TEDx Maastricht, 2011

Patient is not

a third person word

Lesson 1, from TEDx Maastricht, 2011

You can tell a lot about a futurist

by how their predictions pan out

Lesson 2, from 40 years in business:

1969!

Equipped Engaged Empowered Enabled�

�e-Patients are

What do we mean by

Empowered?

Empowerment “Increasing the capacity !of individuals or groups"

to make choices [about what they want]"

and to transform those choices !into desired actions & outcomes”!

World Bank, 2002!

People perform better when they’re

informed better.

Lesson 3, obvious in every industry but healthcare

It’s perverse to keep people

in the dark

and call them ignorant

Corollary:

Median Survival: 24 weeks

How has that one panned out?

How can it be

that the most useful and relevant and

up-to-the-minute information

can exist outside of traditional channels?

How has this one turned out?

Closed system Open network

Transformation of Knowledge Access

How that one has turned out

How a kidney cancer wife found the info she needed •  No insurance;

no treatment. Then:

•  Three bad hospitals; no help. Then:

•  A friend said “I know a guy... on Twitter”

Regina Holliday’s Medical Mural Advocacy Project

The Walking Gallery ReginaHolliday.blogspot.com

You know it’s a revolution when the artists and musicians

show up

Lesson 4 (a culture lesson)

Dr. Eric Topol How’s that one turned out?

bit.ly / topol the data

“Gimme My DaM Data” bit.ly /gimmedata Deloitte guys get on board

“Data Liberación!”

Todd Park Innovator Entrepreneur HHS Chief Technical Officer US Chief Technical Officer

Federal government gets on board

When assets digitize, things change fast.

Lesson 5 (a shocker, in any pre-digital industry)

Why not “Google Earth for my body”?

Case Study: Hugo Campos wants his ICD data

Patient Experience

AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order” Feb 2014: OTC

Hugo Campos @hugooc

[email protected]

My first year with the AliveCor

February 8, 2013

We perform better when we’re

informed better.

#WeAreNotWaiting

#NightScout

#DIYPS (“Do-it-yourself Pancreas System”

Who gets to say what’s in the patient’s best

interest?

The IOM says e-patients are an essential part of tomorrow’s healthcare.

Patient-Clinician Partnerships Engaged, empowered patients— A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

“How can patients participate if they don’t have the information?” – Dr. Danny Sands

How’s this one workin’ out?

WONDERFULLY, thank you.

It’s great to be alive.

Withings

Withings Wi-Fi scale

Fitness wristband & heart band

YMCA Diabetes Prevention Class (food training & physical activity)

MyFitnessPal diet tracking app

Strong spousal support

My doctors can’t see this in their computers!

TEDx Maastricht, 2011

Permettez- moi de vous présenter… les Mini-Me’s.

Half of everyone who’s ever been 65 is alive today

Population today: ~7.0 billion End of World War II: ~2.3 billion

May The Fourth

James Franco as Luke Skywalker showing Yoda’s levitation training

James Franco as Luke Skywalker showing Yoda’s levitation training

Let My Data Go

We perform better when we’re

informed better.

We are

(you are)

the most under-used resource in healthcare.

Let Patients Help.