“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

Let Patients Help Heal Healthcare

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Peter Elias •  “ The drive home felt like being above tree line

in the Presidentials on a day when Mother Nature wants you to go back home.”

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

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

Equipped Engaged

Empowered Enabled”

Doc Tom said, “e-Patients are

Howard Luks, MD @HJLuks

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

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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??

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Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company’s

web site

Median Survival: 24 weeks

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.

E-Patient Activity 2: “My doctor prescribed ACOR”

(Now SmartPatients.com)

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

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

Baseline: 39x43 mm 50 weeks: 20x12 mm

Question:

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How can it be

that the most useful and relevant and

up-to-the-minute information

can exist outside of traditional channels?

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“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)

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

“It may be more dangerous

not to google “your condition.”

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“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.

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Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly

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“Liquidity” transforms

what’s possible

Not liquid Liquid •  Moving it takes effort

•  Slow and predictable

•  Arrivals on unexplained “tracks” are suspicious

•  Frictionless – controlling the flow takes effort

•  Fast and unpredictable

•  “Tracks” everywhere, free

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

Next Lesson: Get Involved in Your Data.

Quality Matters.

Pre-op: “At least you won’t be lopsided.” “What do you mean?” “You’re getting a bilateral mastectomy.” “No I’m not!” “That’s what came to us on this paper.”

“Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.”

“And this CT scan makes my butt look big.”

@Xeni Live tweeting, 12-18-2011

“So I figure out how to open my bone scan data. I look.”

“What the...” “What’s that ****-shaped ghost-shadow thing— it looks like I have a penis!”

“I call a hacker pal. ‘That, Xeni, is a ****.’” “I look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.”

@Xeni Next day: 12-19-2011

Who has the most at stake

with the accuracy, completeness and availability of the medical record?

Urgency: The Demographic

Crunch

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

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

My classmate Jay

The demographic imperative

The demographic imperative

The demographic imperative

My wifi bathroom scale

And finally: recognition

from the establishment

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

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October 2007

2.8 e-Patient Years in Pictures December 2006 May 2009

First Christmas

Last Friday – first birthday

It’s great to be alive.

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

Let Patients Help Heal Healthcare

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