Let Patients Help - Keynote Address by e-Patient Dave deBronkart

JAMIA, 1997

“e-Patient Dave” deBronkart

Twitter: @ePatientDave

facebook.com / ePatientDave

LinkedIn.com / in / ePatientDave

[email protected] Skype: ePatientDave

Let Patients Help

How I came to be here

• High tech marketing

• Data geek; tech trends; automation

• 2007: Cancer discover & recovery

• 2008: E-Patient blogger

• 2009: Participatory

Medicine, Public Speaker

• 2010: full time

• 2011: international

“I want to note especially

the importance of the resource

that is most often under-

utilized in our information

systems – our patients”

Charles Safran MD, Beth Israel Deaconess

quoting his colleague, Warner Slack MD Testimony to the House Ways & Means

subcommittee on health, 2004

Foundation Principles

• Patient is not a third person word – Your time will come

– It’s a collective noun.

• Patients are the ultimate stakeholder – Yet they’re often omitted from planning the future

• A pivotal force: The urge to care

for our children and elders

e-Patients.net founder

Tom Ferguson MD 1944-2006

Equipped

Engaged

Empowered

Enabled”

Doc Tom said,

“e-Patients are

JAMIA, 1997

Pt of future

Me? An indicator of the future??

• Who’s getting online: – 1989: Me (CompuServe sysop)

– 2009: 83% of US adults (Pew)

• Who’s romancing online: – 1999: I met my wife (Match.com)

– 2009: One in eight weddings

in the U.S. met online

– 2011: One in five couples

met online

The Engaged Patient 12 items in my pre-appointment “agenda” email

The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007

“Your shoulder will be fine … but there’s something in your lung”

Multiple tumors in both lungs Where’s This From??

Primary Tumor: Kidney

E-Patient Activity 1:

Researching my condition

Classic

Stage IV,

Grade 4

Renal Cell

Carcinoma

Illustration on

the drug company’s

web site

Median Survival:

24 weeks

Facing the Reaper

My mother

My daughter

After the shock

you’re left with the question:

What are my options?

What can I do?

Get engaged.

Get it in gear.

Do everything you can.


“My doctor prescribed ACOR” (Community of my patient peers)

ACOR members told me:

• This is an uncommon disease –

get to a hospital that does a lot of cases

• There’s no cure, but HDIL-2 sometimes works. – When it does, about half the time it’s permanent

– The side effects are severe.

• Don’t let them give you anything else first

• Here are four doctors in your area who do it – And one of them was at my hospital


Reading (and sharing)

my hospital data online


My own social support network (CaringBridge.org - family and friends - journal & guestbook)


Tracking my data

Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe

Baseline: 39x43 mm 50 weeks: 20x12 mm

Nice curve!

Question:

How can it be

that the most useful

and relevant and

up-to-the-minute information

can exist outside of

traditional channels?

“If I read two journal articles every night,

at the end of a year I’d be 400 years behind.”

It’s not humanly possible to keep up.

Dr. Lindberg: 400 years

The lethal lag time: 2-5 years

During this time,

people who might have benefitted can die.

Patients have all the time in the world

to look for such things.

The time it takes after successful research is completed

before publication is completed and the article’s been read.

Because of the Web,

Patients Can Connect to Information

and Each Other (and other Providers)

Compare with

- “To Err is Human” (98,000 deaths/yr Nov 1999)

Death by Googling: Not.

(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)

“It may be

more dangerous

not to google

“your condition.”

“These conclusions

are no more anti-doctor

or anti-medicine

than Copernicus and Galileo

..were anti-astronomer.”

Patients can simply contribute

more today than in the past.

Web 2.0: “When the web began to harness

the intelligence of its users.” – Tim O’Reilly

“My patients

aren’t like that.”

“They aren’t

asking for this.”

Objection:

“How can patients participate if they can’t

see what I see?” – Dr. Danny Sands

Lesson learned:

People perform better

when they’re

informed better.

Obstacle to adoption:

“But patients

don’t understand

this stuff.”

It’s perverse

to keep people

in the dark

and call them ignorant

Corollary:

If the data’s unclear

let’s MAKE it clear

Like other industries do.

Thomas Goetz, Wired

Thomas Goetz, Wired “It’s time to redesign medical data”

Same data –

better software.

Information: clearer.

Consumer:

informed, enabled.

Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com

Why not “Google Earth for my body”?

OsiriX

Dr. Eric Topol

iPhone EKG??

12/3/12:

“FDA clears iPhone heart

monitor, doctors can pre-order”

Who gets to say what value

is, in the first place??

You know

it’s a revolution

when…

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

Information makes a difference.

And finally:

recognition

from the

establishment

Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”

Yes, the IOM itself

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.

October 2007

2.8 e-Patient Years in Pictures…

December 2006 May 2009

JAMIA, 1997






Let Patients Help

JAMIA, 1997






e-Patients Can Help

Improve Healthcare

Case Study #3:

Hugo Campos wants his ICD data

Full, unrestricted & convenient access.

Doctor Experience

Patient Experience

$99 Activity Fitbit

$129 Blood Pressure Withings BP Monitor

Weight Withings WiFi Scale

$159

$149 Sleep Zeo Sleep Manager

No data

Implanted Cardiac Defibrillator

$30,000

Raw data

JAMIA, 1997

Dutch IVF program

had an insane idea

• Give patient couples

a wiki, and six months

to talk amongst them-

selves. The promise:

• “We’ll give you anything

you decide – your top

ten choices. Unedited.”

Top things IVF patients asked for

• I want insurers to reimburse six attempts.

• I want insurance companies to only count it

if a puncture or a replacement has taken place.

• I want empathy from my doctor,

not just technical or financial information.

• I want separate waiting rooms for pregnant women

and patients with a fertility treatment

• I want more time to make an appointment,

even in the evening.

“Data Liberación”

Todd Park Innovator

Entrepreneur

HHS Chief Tech Officer

US Chief Tech Officer

How to start?

Here’s the

magic incantation

“I’m the kind of patient

who likes to understand

as much as I can

about my health.”

“Could I ask

some questions?”

Obstacle to adoption:

“Patients will

flood us with

time-wasting

questions.”

OpenNotes

What happens when patients see

their doctors’ notes?

Announced this past Monday

• 99% of patients wanted to continue

• 17-26% of docs preferred not to… – But when given the chance to stop, none

did

• 85-89% of patients said availability of

open notes would influence their

choice of providers and health plans

Health & Medicine

Let Patients Help - Keynote Address by e-Patient Dave deBronkart