AMIA 2013 convention - opening plenary (standing ovation!)


Daniel Z. Sands, MD, MPH
Society for Participatory Medicine
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, MA
© Copyright 2013 D. Z. Sands, All Rights Reserved
Introduction of e-Patient Dave


President John F. Kennedy
Berlin Wall, Jun 26, 1963
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 Dave
Circa 2010, as interpreted by Dr. Danny Sands, who shares this feeling
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”
Dave deBronkart, a.k.a.,
e-Patient Dave

“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.

How I came to be here
• High tech marketing
• Data geek; tech trends; automation
• 2007: Cancer discovery & recovery
• 2008: E-Patient
blogger
• 2009: Participatory
Medicine, Public
Speaker
• 2010: full time

The only purpose
for recording information
(on paper or electronic)
is so someone can
read it back and act on it.

To do this with computers,
we encode it
and decode it.

It matters
whether the picture you get
when you read it back
matches the picture you
intended when you stored
it

Source: Wikipedia DIKW-diagram.png

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: 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 lungsWhere’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

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 Death
Jones (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

Half of everyone who’s
ever been 65 is alive today
Population today: ~7.0 billion
End of World War II: ~2.3 billion

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.”
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

Liquidity
transforms
what’s possible
because it
alters the availability
of 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’re
informed 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.”
@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

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
aren’t like that.”
“They aren’t
asking for this.”
Objection:

Until people get
experience,
they’re inexperienced!

It’s perverse
to keep people
in the dark
and call them ignorant
Corollary:

Capture iNFORMATION about
the iNDIVIDUAL and
apply iNFORMATICS to
create iNTELLIGENCE that
drives iNNOVATION to
radically iMPROVE healthcare

AMIA 2013 convention - opening plenary (standing ovation!)

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AMIA 2013 convention - opening plenary (standing ovation!)