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My annual lecture to John Glaser's class for innovators in the Wharton MBA program at the U of Pennsylvania. Includes added slides for topics I mentioned beyond the slides shown.
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“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave
The e-Patient’s Perspective
“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
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
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
JAMIA, 1997
Pt of future
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??
Primary Tumor: Kidney
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival: 24 weeks
E-Patient Activity: “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
How can it be
that the most useful and relevant and
up-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.”
Dr. Lindberg: 400 years
The lethal lag time: 2-5 years
The time it takes after successful research is completed before publication is completed and the article’s been read.
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
Case Study: Hugo Campos wants his ICD data
Full, unrestricted & convenient access.
Doctor Experience
Patient Experience
$99 Activity Fitbit
$129 Blood Pressure Withings BP Monitor
Weight Withings WiFi Scale
$159
$149 Sleep Zeo Sleep Manager
No data
Implanted Cardiac Defibrillator
$30,000
Raw data
Put empowering information
in consumers’ hands
Dr. Eric Topol
iPhone EKG??
12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”
Data quality is essential.
Let Patients Help.
Who has the most at stake
with the accuracy, completeness and
availability of the medical record?
“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.”
“Data Liberación”
Todd Park Innovator Entrepreneur HHS Chief Tech Officer US Chief Tech Officer
“My patients aren’t like that.”
“They aren’t asking for this.”
Objection:
Source:
“45 vintage sexist ads that wouldn’t go down
well today”
(Viral on Facebook, Fall 2013)
Obstacle to adoption: “But patients
don’t understand this stuff.”
If the data’s unclear let’s MAKE it clear
Like other industries do.
Thomas Goetz, Wired
Thomas Goetz, Wired “It’s time to redesign medical data”
Same data – better software.
Information: clearer.
Consumer: informed, enabled.
Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com
Why not “Google Earth for my body”?
OsiriX
You know it’s a revolution when the artists and musicians
show up
on.TED.com/Dave
Information makes a difference.
bit.ly/DataSong
Huge Lesson: When assets
digitize, things move fast.
Permettez- moi de vous présenter… les Mini-Me’s.
October 2007
2.8 e-Patient Years in Pictures… December 2006 May 2009
“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com/ePatientDave LinkedIn.com/in/ePatientDave
The e-Patient’s Perspective
