talk to seattle rotary, sept. 24, 2014

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

Let Patients Help Heal Healthcare.

1

Note my branding

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

“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”

e-Patients.net founder Tom Ferguson MD 1944-2006

Equipped Engaged Empowered Enabled�

Doc Tom said, �e-Patients are

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company's

web site

Median Survival: 24 weeks

�My doctor prescribed ACOR� (Community of my patient peers)

ACOR patients 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

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

Baseline: 39x43 mm 50 weeks: 20x12 mm

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, Germany: 0 deaths found in a three year search)

- HHS Inspector General (15,000/mo Nov 2010)

“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

“Liquidity” transforms

what’s possible

Not liquid •  Moving it takes effort

•  Slow and predictable

•  Arrivals on unexplained “tracks” are suspicious

•  Frictionless – controlling the flow takes effort

•  Fast and unpredictable

•  “Tracks” are everywhere

Liquid

Wall Street Journal, June 10

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.

“How can patients participate if they can’t see what I see?” – Dr. Danny Sands

June 11, 2014 •  Patient advisory panel

•  Patient peer review of research papers

•  Authors are to document how they involved patients in defining the question and outcome measures

This movement is a cultural revolution.

You know it’s a revolution

when the artists and musicians show up.

Regina Holliday’s “Walking Gallery of Healthcare”

Keith Boone @Motorcycle_Guy “the e-Patient Rap”

EDITED FROM THE USUAL!!! No ovals

“Gimme My DaM Data”

Problem(?) Chronic Disease Epidemic

CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death#

Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM%

Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#

White box

Problem(?) Chronic Disease Epidemic

CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death#

Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM%

Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#

White box

34

My classmate Jay

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

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

0.2% 0.1% 0.3%

. . . . . . . . . . . . . . .

. .

US population 152.3 million 85+: 457k

Source 1: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv

0.3% 0.2% 0.5%

. . . . . . . . . . . . . . .

. .

US population 180.7 million 85+: 904k


0.4% 0.2% 0.6%

. . . . . . . . . . . . . . . .

.

US population 205.0 million 85+: 1.23 million


0.7% 0.3% 1.0%

. . . . . . . . . . . . . . .

. .



0.9% 0.3% 1.2%

. . . . . . . . . . . . . . .

. .



1.0% 0.5% 1.5%

. . . . . . . . . . . . . . .

. .


Source 2: http://www.census.gov/popest/data/intercensal/national/tables/US-EST00INT-01.xls

1.1% 0.6% 1.7%

. . . . . . . . . . . . . . .

. .


Source 2: http://www.census.gov/popest/data/intercensal/national/tables/US-EST00INT-01.xls

1.3% 0.7% 2.0%

. . . . . . . . . . . . . . .

. .



1.5% 0.9% 2.4%

. . . . . . . . . . . . . . .

. .



2.3% 1.4% 3.7%

. . . . . . . . . . . . . . .

. .



2.7% 1.7% 4.4%

. . . . . . . . . . . . . . .

. .



The times call for

committed action.

The lives and well-being of

(y)our families are at stake.

The movement needs competent middle managers.

At SPM we need capable middle managers to … •  Define a deliverable people would find useful

–  Starter: what would you find useful?

•  Frame out a plan to make it happen

•  Pull together a small team to do it •  Sit on it until it’s hatched

•  Iterate to ecstasy!

Top-of-head project ideas we know would be valuable

1. Create “newbie to-do” tip sheets

•  “Where do I start? What are my simple to-do’s?” –  For patients and for clinicians

•  Gathering and managing your health records

•  For docs: how to let patients help

More top-of-head ideas we know would be valuable

2. Programs for marketers and movement kindlers •  Design a public awakening campaign:

what would be effective to tell people?

•  Spread the word – dissemination

More top-of-head ideas we know would be valuable

3. Programs for data geeks

•  Data quality awareness and best practices (workflow matters; resilient systems…)

•  Anything to help (or disrupt) the HIT nerds

More! top-of-head ideas we know would be valuable

4. Sociology / community

•  Analyzing what’s happening in the movement and what could be happening

•  Figure out how some patient communities get great and some don’t. Can we bottle it?

Do you want to help create this new world?

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

Let Patients Help Heal Healthcare.

57

Note my branding

talk to seattle rotary, sept. 24, 2014

Health & Medicine