Brookings Institute social media panel, Feb 2014

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

Information at the point where it’s needed makes all the difference.

Social media is like capillaries,

moving information like a nutrient.

Social media is like capillaries, moving information like a nutrient.

If you’re looking for information in a “1.0” way and it’s moving in 2.0 ways,

you won’t know what’s happening.

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

Liquidity transforms

what’s possible because it

alters the availability of a vital resource.

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

What could be more patient-centered than your child’s doctor

not being ten years out of date?

Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000

Flu vaccine, year 32: 55% doing it, 45% still not

Beta blockers, year 18: 62% doing it, 38% still not

Diabetic foot care, year 7: 20% doing it, 80% still not

Cholesterol, year 16: 65% doing it, 35% still not

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The Fourth Paradigm on years to disseminate new medical knowledge

Scurvy!

264 !years!!

Scurvy!

264 !years!!

From The Fourth Paradigm by Microsoft Research

�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)

“The oft-expressed fear that patients are using the internet to self-diagnose and self-medicate without reference to medical professionals does not emerge in national phone surveys or in this special rare-disease community survey.”

Physician as trusted authority

“There’s crap on the internet. We need to get out there and balance it”

Wendy Sue Swanson, MD Mother & pediatrician

@SeattleMamaDoc

Facebook too

•  “The more info we push out, the better decisions they make”

•  “We’ve taken a demographic group and through connected technology they’re engaged in their health”

•  “Our patients tell their friends – ‘and he’s on Facebook’”

An OB/Gyn on social media?? @MacObGyn

Patients know what patients want

to know.

Sugata Mitra (TED Prize): Self-organized

learning environments

Will we ever see

Self-organized

patient environments?

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

“The oft-expressed fear that patients are using the internet to self-diagnose and self-medicate without reference to medical professionals does not emerge in national phone surveys or in this special rare-disease community survey.”

Physician is still the trusted authority (Susannah Fox, Pew Research)

My favorite complaint about

patient engagement:

“Patients are the only ones who don’t have

any skin in the game” – Practice manager, quoted in

Health Leaders, Fall 2011

What happens when a consumer

tries to be responsible about costs?

The choices they offered

Premium''

Deduc+ble''

Co0pay'a4er''

deduc+ble'

Max'OOP''(deduc+ble''+'co0pay)'

Stop0loss'max'(in0network'+'

out)'

Op#on&A& $894&& $1,000&& 20%& $3,500&& $12,500&&

Op#on&B& $705&& $2,500&& 20%& $5,000&& $12,500&&

Op#on&C& $581&& $5,000&& 20%& $7,500&& $12,500&&

Op#on&D& $495&& $10,000&& 0%& $10,000&& n/a&

Op#on&H& $624&& $5,950&& 0%& $5,950&& $12,500&&

I know – run some scenarios!

=IF(maxoop<J17+J18,maxoop,J17+J18)

I know – graph it!

Insurer actuaries have this picture.

Patients don’t.

That’s called information asymmetry (an advantage in war)

People perform better when they’re

informed better.

It’s perverse to keep people

in the dark

and call them ignorant

Speaking of skin in the game…

“How much will this cost me?” Hospital: “We don’t know – ask

your insurance.”

Insurance: “We don’t know – ask your hospital.”

So I did what empowered buyers do dave.pt/skincancerRFP

Of course, I got no responses

to my RFP.

So I spent months calling around and asking “What will

show up on the bill?”

So at TEDMED, this guy irked the crap out of me:

Him: “Patients spend 10x more time

choosing a TV than choosing healthcare”

[Me: Dude! There’s no info

for patients to research!]

Punch line: When I was shopping,

his lab was one of the ones who said

“We don’t know”!

Fix that, THEN we’ll see what patients do.

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

Information at the point where it’s needed makes all the difference.