connected health & me - epatient dave - nov 24th 2014
TRANSCRIPT
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
People Perform Better
When They’re
Informed Better
1
“It can be argued
that the largest
yet most neglected
health care resource,
worldwide,
is the patient…”
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
The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your shoulderwill be fine …but there's something in your lung”
Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company's
web site
Median Survival:
24 weeks
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
up-to-the-minute information
can exist outside of
traditional channels?
“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)
“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.
• 99% of patients wanted to continue
• 17-26% of docs preferred not to…– But when given the chance to stop, none
did
• 85-89% of patients said availability of
open notes would influence their
choice of providers and health plans
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billion
End of World War II: ~2.3 billion
Your mother’s physicians
cannot perform
to the top of their ability
if the facts they’re given
are wrong
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
People Perform Better
When They’re
Informed Better
38