AMSA OpenNotes / Let Patients Help speech, March 2014

“e-Patient Dave” deBronkart Twitter: @ePatientDave

facebook.com/ePatientDave LinkedIn.com/in/ePatientDave

dave@epatientdave.com

Information at the point where it’s

needed can save lives.

“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

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.

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

Equipped Engaged Empowered Enabled”

Doc Tom said, “e-Patients are

From 1972-1975 Peter Frishauf was

National Correspondent for The New Physician.

SAMA office, 1972

He met Katharine Rice (aka K.C. Rice) there.

The New Physician at the AMA Convention, 1974

They’ve been rocking ever since, and they say thank you

SAMA / AMSA!

And then…

And then…

Frishauf founded Medscape

“Data Liberación!”

Todd Park Innovator Entrepreneur HHS Chief Technical Officer US Chief Technical Officer

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

Equipped Engaged Empowered Enabled”

Doc Tom said, “e-Patients are

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

“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

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

People perform better when they’re

informed better!

Who knew??

What if the information

they give you is wrong?

Data quality is essential.

Let Patients Help.

“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

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.”

VA’s Veterans eHealth University, 2012 – audience response: Have you looked in your medical record?

Do you know if it has mistakes?

OpenNotes

Big data? Whose data?

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

Creative Commons Attribution / Share-Alike May be distributed with this license included

Scurvy

264 ���years!

From The Fourth Paradigm by Microsoft Research

Big data? Whose data?

WikiProject Medicine

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

I was an Engaged Patient: 2006 12 items in my pre-appointment “agenda” email

Who has the most at stake

with the accuracy, completeness and

availability of the medical record?

Data quality is essential.

Let Patients Help.

“My patients are poor and don’t have

a computer.”

Objection:

“My patients aren’t like that.”

“They aren’t asking for this.”

Objection:

Beware cognitive dissonance

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”

Yes friends, it’s an information revolution.

But it’s not to burn anything down.

It’s a revolution of new possibilities.

Huge Lesson: When assets

digitize, things move fast.

Permettez- moi de vous présenter… les Mini-Me’s.

Let Patients Help.

Sic ’em! facebook.com / ePatientDave

LinkedIn.com / in / ePatientDave dave@epatientdave.com

“e-Patient Dave” deBronkart Twitter: @ePatientDave

JAMIA, 1997

“e-Patient Dave” deBronkart Twitter: @ePatientDave

facebook.com / ePatientDave LinkedIn.com / in / ePatientDave

dave@epatientdave.com Skype: ePatientDave

Let Patients Help Heal Healthcare