Relation between cost & quality
Elliott Fisher at Health Datapalooza 6/2/14
(What if everyone
what the lower left
Cost of the care !
“It can be argued
that the largest
yet most neglected
is the patient…”
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
• 2011: international
Tom Ferguson MD
Doc Tom said,
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
The Engaged Patient
12 items in my pre-appointment agenda email
E-Patient Activity 1:
Researching my condition
the drug company's
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
E-Patient Activity 3:
Reading (and sharing)
my hospital data online
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
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:
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.
To Err is Human (98,000 deaths/yr Nov 1999)
Death by Googling:
(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)
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.
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
can possibly perform
to the top of their
training if the data
they’re given is wrong.
“Now I know why docs
don’t give you scan data.
I see theVirgin Mary,
Jimmy Hoffa, several forks,
and Saddam’s yellowcake
hiding in my guts.”
“And this CT scan makes my butt look big.”
Live tweeting, 12-18-2011
“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.”
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.”
• 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!
Institute of Medicine –
Major New Report:“Best Care at Lower Cost”
Yes, the IOM itself
says e-patients are an
essential part of
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
Gorgeous, wonderful new
book by Parkinson patients
When assets digitize,
things move fast.
Someday 3D printing
will move downmarket
to consumer level