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
“I want to note especially
the importance of the resource
that is most often underutilized 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
Doc Tom said,
Tom Ferguson MD
Me? An indicator • Who’s getting online:
– 1989: Me (CompuServe sysop)
of the future??
– 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
The Engaged Patient
12 items in my pre-appointment “agenda” email
After the shock
you’re left with the question:
What are my options?
What can I do?
Get it in gear.
Do everything you can.
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
Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm
50 weeks: 20x12 mm
How can it be
that the most useful
and relevant and
can exist outside of
Dr. Lindberg: 400 years
“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.
The lethal lag time:
The time it takes after successful research is completed
before publication is completed and the article’s been read.
During this time,
people who might have benefitted can die.
Patients have all the time in the world
to look for such things.
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
Death by Googling:
(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)
- “To Err is Human”
“It may be
not to google
are no more anti-doctor
than Copernicus and Galileo
Patients can simply contribute
more today than in the past.
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
Engaged, empowered patients—
A learning health care system is
anchored on patient needs and
and promotes the inclusion of patients,
families, and other caregivers as vital
members of the continuously learning
Can we measure…
Half of everyone who’s
ever been 65 is alive today
End of World War II: ~2.3 billion
“How can patients participate if they can’t
see what I see?” – Dr. Danny Sands
Can we measure…
Live tweeting, 12-18-2011
“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.”
Next day: 12-19-2011
“So I figure out how to open
my bone scan data. I look.”
“What’s that ****-shaped
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.”
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,
of the medical record?