e-Patient Dave Midwest MLA 10-20-12

You Are Vital to the
Future of Healthcare

“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
dave@epatientdave.com
Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

Foundation Principle 1

Patient is not
a third person word.
Your time will come.



A pivotal force:
The urge to care
for our children and elders


1 + 2 equals:

Think about this
in terms of your own kids
and your own parents.
(And maybe yourself.)



Everyone
performs better
when they’re better
informed.


Someday you’ll
really care
how well informed
the care team is.


How I came to be here
•  High tech marketing
•  Data geek; tech trends; automation
•  2007: Cancer kicker
•  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 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


Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)

Doc Tom said, e-Patients.net founder
“e-Patients are E quipped
Tom Ferguson MD
Engaged
1944-2006

Empowered
Enabled”

e-Patient
White
Paper
e-patients.net


Pt of future


Me? An indicator •  Who’s getting online:
–  1989: Me (CompuServe sysop)
of the future?? –  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


JAMIA, 1997


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??

E-Patient Activity 1:
Researching my condition


Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company's
web site

Median Survival:
24 weeks

Facing the Reaper


My mother


My daughter


After the shock
you’re left with the question:
What are my options?
What can I do?


Get engaged.
Get it in gear.
Do everything you can.


“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


Reading (and sharing)
my hospital data online

My own social support network
(CaringBridge.org - family and friends - journal & guestbook)

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

Question:


How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?


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.


Lesson learned:
Any clinician
whose sense of self-worth
depends on knowing
everything
is in big trouble.


It’s no failure
on the clinician’s part
if a patient’s seen something
they haven’t.


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.

During this time,
people who might have benefitted can die.

Patients have all the time in the world
to look for such things.

Death by Googling:
Not.
(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)

Compare with
“To Err is Human” (98,000 deaths/yr Nov 1999)


“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.


VA’s “Blue Button” 1 million
2012:
(and DoD & Medicare) + Automatic!

OpenNotes

What happens
when patients see
their doctors’
notes?

Announced this past Monday


•  99% of patients wanted to continue"

•  17-26% of docs preferred not to continue…"
–  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"


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
“It’s time to redesign medical data”


Same data –
better software


Psoas muscle
(My kidney tumor was encroaching on it) my rendering on VisibleBody.com


Why not “Google Earth for my body”?


The information’s
clearer


The family’s
enabled and
empowered.


Health on the Internet:
Separating the Gold
from the Garbage


Nov. 2007:
This googling patient
was a nightmare

(Title should have been
“When the patient is a
yahoo”!)


o
Feb. 2010:
Sites like ACOR &
PatientsLikeMe:
patients are
creating value by
connecting


Jan. 2011:
Googling patient
helps doc find
correct diagnosis
more quickly


e-Patient families
need
information coaches.
That would be you.


http:// b i t .ly / gold from garbage


“All knowledge
is in constant beta”
Gilles Frydman, ACOR founder
ICSI / IHI Colloquium, May 2010


Autopsy shows ...
10-15% of diagnoses were wrong
(So how could the treatments be right??)


Autopsy shows ...
10-15% of diagnoses were wrong
(So how could the treatments be right??)

He wrote his
epilogue to patients:
Questions for
partnering with
your providers on
“What else
could this be, doc?”


“Retraction Watch” blog


Informed
Medical
Decision
Making


“Ultimately,
it turned out
to be the trade-
off between
peeing better
and sex.”


“And when it
was stated
in those terms,
SDM flowed
into the
conversation.”


Adoption of new practices
years after discovery Flu vaccine, year 32:
55% doing it,
45% still not
From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Beta blockers, year 18:
62% doing it,
38% still not

Cholesterol, year 16:
65% doing it,
35% still not

Diabetic foot care, year 7:
20% doing it,
80% still not

Creative Commons Attribution / Share-Alike
May be distributed with this license included

What is
the standard of care
for condition x??


Great way medlibs
can enable families:
populate StandardsOfCare.org


Web 2.0: “When the web began to harness
the intelligence of its users” – Tim O’Reilly


“Data Liberación”
Todd Park
Innovator
Entrepreneur
HHS Chief Tech Officer
US Chief Tech Officer


Patients Like Me


Obstacle:
“I hate to bother you...”


BOTHER US!


Let’s get bothered!
bit.ly / bother amedlib

To get bothered: bit.ly / bother-signup

You know
it’s a movement
when the artists and
musicians show up


The Walking Gallery
ReginaHolliday.blogspot.com
Regina Holliday’s
Medical Mural Advocacy Project


“When e-Patient Dave pushed the button to send his data
to Google Health, what happened was front page news.”

False medication warning

The hospital transmitted every
condition I ever had, with no dates;
all conditions were shown as current


Blog to print
New media gave me
“freedom of the
press”
Traditional media
gave me credibility
and impact
And a conference...

Amazingly, concerned and
activated families
do look for health information!


It’s the e-Patient


MOVIE

bit.ly / DataSong

Best Care at Lower Cost
Institute of Medicine – Sept 2012


2.8 e-Patient Years in Pictures…
December 2006 October 2007 May 2009

September
2009


May You Get
Bothered a Lot.
bit.ly / botheramedlib


e-Patient Dave Midwest MLA 10-20-12

Recomendados

Recomendados

Más contenido relacionado

Similar a e-Patient Dave Midwest MLA 10-20-12

Similar a e-Patient Dave Midwest MLA 10-20-12 (20)

Más de e-Patient Dave deBronkart

Más de e-Patient Dave deBronkart (20)

Último

Último (20)

e-Patient Dave Midwest MLA 10-20-12