amia 2013 convention - opening plenary (standing ovation!)

Daniel Z. Sands, MD, MPHSociety for Participatory MedicineBeth Israel Deaconess Medical CenterHarvard Medical SchoolBoston, MA

© Copyright 2013 D. Z. Sands, All Rights Reserved

Introduction of e-Patient Dave

President John F. KennedyBerlin Wall, Jun 26, 1963

© Copyright 2013 D. Z. Sands, All Rights Reserved

All free men … are citizens of Berlin, and therefore … I take pride in the words “Ich bin ein Berliner!” Ich bin ein Berliner!

E-Patient DaveCirca 2010, as interpreted by Dr. Danny Sands, who shares this feeling

© Copyright 2013 D. Z. Sands, All Rights Reserved

All people … are or will be patients, and therefore … I take pride in the words “I am a patient!” I am a patient!

Former technology manager, working in industries as diverse as typesetting and SaaS

Became blogger, speaker, health policy advisor, and e-patient advocate after beating stage IV renal cell carcinoma in 2007

Co-founded Society for Participatory Medicine in 2009 and has helped lead organization—we are currently co-chairs of the board

Frequently quoted in media

TEDx talk “Let Patients Help” is in top half of most viewed TED talks

Frequent keynote presenter, occasionally with his PCP

Author of two books, including one as collaboration with his PCP

In 2009 HealthLeaders Media named Dave and his PCP to their annual list of “20 People Who Make Healthcare Better”

© Copyright 2012 D. Z. Sands, All Rights Reserved

Dave deBronkart, a.k.a., e-Patient Dave

“e-Patient Dave” deBronkart

Twitter: @ePatientDavefacebook.com/ePatientDave

LinkedIn.com/in/ePatientDavedave@epatientdave.com

Information at thepoint where it’s needed can save

lives.

How I came to be here

• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discovery & recovery

• 2008: E-Patient blogger

• 2009: ParticipatoryMedicine, Public Speaker

• 2010: full time

• 2011: international

The only purposefor recording

information (on paper or electronic)is so someone can

read it back and act on it.

To do this with computers, we encode

itand decode it.

It matterswhether the picture

you get when you read it backmatches the picture

you intended when you stored it

Source: Wikipedia DIKW-diagram.png

e-Patients.net founderTom Ferguson MD 1944-2006

Equipped

Engaged

Empowered

Enabled”

Doc Tom said,

“e-Patients are

1998

Pt of future

Me? An indicator of the future??

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

sysop)– 2009: 76% 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

2007: My “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??

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company's

web site

Median Survival:24 weeks

E-Patient Activity 2:“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

E-Patient Activity 3:Reading (and sharing) my hospital data online

E-Patient Activity:Tracking my data

During a serious disease,the chance to be engaged (or to help) is a huge mood

booster,infinitely better than “I'm helpless / there's nothing I can

do”

Surgery & Interleukin worked.

Target Lesion 1 – Left Upper Lobe

Baseline: 39x43 mm 50 weeks: 20x12 mm

Problem(?) Chronic Disease Epidemic

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

Problem(?) Chronic Disease Epidemic

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

My classmate Jay

Half of everyone who’s ever been 65 is alive

todayPopulation today: ~7.0 billionEnd of World War II: ~2.3 billion

Question:

How can it bethat the most useful

and relevant andup-to-the-minute

information can exist outside of traditional channels?

Because of the Web, Patients Can Connect to

Information and Each Other (and other

Providers)

“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.

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

Liquiditytransforms

what’s possiblebecause it alters the

availabilityof a vital resource.

Information liquidity.

Data liquidity.

Not Liquid Liquid

• Moving it takes effort

• Slow and predictable

• Unexplained arrivals

are suspicious

• Frictionless – controlling the flow takes effort

• Fast and unpredictable

• “Tracks” everywhere, free

“Shift Index”

“We are shifting from a world where the key source of strategic advantage was in protecting and extracting value from a given set of knowledge stocks ...

“Shift Index”

“...into a world in which the focus of value creation is effective participation in knowledge flows.”

–Thomas Friedman Pulitzer prize winner (3x)

New York Times January 19, 2010

People perform better

when they’reinformed better.

What if the information they give you

is wrong?

VA’s Veterans eHealth University, 2012 – audience response:

Have you looked in your medical record? Do you know if it has

mistakes?

“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.”

@XeniLive 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.”

@XeniNext day: 12-19-2011

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.”

Who has the most at stake

with the accuracy, completeness and

availabilityof the medical record?

Data quality is essential.

Let Patients Help.

“The Wicked Bible”(1631)

New: Patient chart notes

“My patients aren’t like that.”

“They aren’t asking for this.”

Objection:

Until people get experience,

they’re inexperienced!

It’s perverseto keep people

in the darkand call them

ignorant

Corollary:

Capture iNFORMATION about

the iNDIVIDUAL and

apply iNFORMATICS to

create iNTELLIGENCE that

drives iNNOVATION to

radically iMPROVE healthcare

Morris Collen turns 100

“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

Information at thepoint where it’s needed can save

lives.