Let Patients Help Improve Health and Care!

Let Patients Help
Improve Health and Care
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
[email protected]
1
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
“It can be argued
that the largest
yet most neglected
health care
resource,
worldwide,
is the patient…”
Doc Tom said,
“e-Patients are
e-Patients.net founder
Tom
Ferguson MD
quipped
E
Engaged
Empowered
Enabled”
1944-2006
JAMIA, 1997
Pt of future
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
met online
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??
Primary Tumor: Kidney
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.
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
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.
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.
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
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)
I
G
m
“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.
Urgency:
The Demographic
Crunch
Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#
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#
Problem(?)
Chronic Disease Epidemic
34
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&
My classmate Jay
Half of everyone who’s
ever been 65 is alive today
Population today:
~7.0 billion
End of World War II: ~2.3 billion
US population
152.3 million
85+: 457k
0.3%
0.1%
.
.
.
.
.
.
.
.
.
0.2%
.
.
.
.
.
.
.
.
US population
180.7 million
85+: 904k
0.5%
0.2%
.
.
.
.
.
.
.
.
.
0.3%
.
.
.
.
.
.
.
.
US population
205.0 million
85+: 1.23
million
0.6%
0.2%
.
.
.
.
.
.
.
.
0.4%
.
.
.
.
.
.
.
.
.
US population
227.2 million
85+: 2.27
million
1.0%
0.3%
.
.
.
.
.
.
.
.
.
0.7%
.
.
.
.
.
.
.
.
US population
249.5 million
85+: 2.99
million
1.2%
0.3%
.
.
.
.
.
.
.
.
.
0.9%
.
.
.
.
.
.
.
.
US population
282.2 million
85+: 4.23
million
1.5%
0.5%
.
.
.
.
.
.
.
.
1.0%
.
.
.
.
.
.
.
.
.
US population
309.3 million
85+: 5.26
million
1.7%
0.6%
.
.
.
.
.
.
.
.
1.1%
.
.
.
.
.
.
.
.
.
US population
333.9 million
85+: 6.68
million
2.0%
0.7%
.
.
.
.
.
.
.
.
1.3%
.
.
.
.
.
.
.
.
.
US population
358.5 million
85+: 8.60
million
2.4%
0.9%
.
.
.
.
.
.
.
1.5%
.
.
.
.
.
.
.
.
.
.
US population
380.0 million
85+: 14.1
million
3.7%
1.4%
.
.
.
.
.
.
2.3%
.
.
.
.
.
.
.
.
.
.
.
US population
399.8 million
85+: 17.6
million
4.4%
1.7%
.
.
.
.
.
.
2.7%
.
.
.
.
.
.
.
.
.
.
.
The IOM itself
says e-patients are an
essential part of
tomorrow’s healthcare.
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 team.
Data quality is
essential.
Let Patients Help.
No clinician
can possibly perform
to the top of their
training if the data
they’re given is wrong.
Wall Street Journal, June 10
People perform better
when they’re
informed better.
Corollary:
It’s perverse
to keep people
in the dark
and call them ignorant
Obstacle to adoption:
“Patients will
flood us with
time-wasting
questions.”
Announced this past Monday
57
© e-Patient Dave
Re-use is permitted with this notice
58
59
•  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!
2.8 e-Patient Years in Pictures…
December 2006
October 2007
May 2009
Let Patients Help
Improve Health and Care
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
[email protected]
63