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e-Patient Dave's keynote address at the 2013 Saskatchewan Health Care Quality Summit. For more information about the summit, visit www.qualitysummit.ca. Follow @QualitySummit on Twitter. E-Patient Dave's presentation, "Let patients help: The most under-used member of the health care team", closed the Summit with a bang and a standing ovation. Dave deBronkart, a survivor of Stage IV liver cancer, may be the leading spokesperson for the e-Patient movement. E-Patients are Empowered, Engaged, Equipped and Enabled and Expert. They know more about their own health, and their health care experience, than any other member of their care team. Dave shared his own story about becoming an e-Patient, and left us inspired and informed about how to “let patients help” improve health care.
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JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
[email protected] Skype: ePatientDave
Let Patients Help
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 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
Foundation Principles
• Patient is not a third person word – Your time will come
– It’s a collective noun.
• Patients are the ultimate stakeholder – Yet they’re often omitted from planning the future
• A pivotal force: The urge to care
for our children and elders
e-Patients.net founder
Tom Ferguson MD 1944-2006
Equipped
Engaged
Empowered
Enabled”
Doc Tom said,
“e-Patients are
JAMIA, 1997
Pt of future
Me? An indicator of the future??
• Who’s getting online: – 1989: Me (CompuServe sysop)
– 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
E-Patient Activity 4:
My own social support network (CaringBridge.org - family and friends - journal & guestbook)
E-Patient Activity 5:
Tracking my data
Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
Nice curve!
Question:
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.
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
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)
“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.
Web 2.0: “When the web began to harness
the intelligence of its users.” – Tim O’Reilly
“My patients
aren’t like that.”
“They aren’t
asking for this.”
Objection:
“How can patients participate if they can’t
see what I see?” – Dr. Danny Sands
Lesson learned:
People perform better
when they’re
informed better.
Obstacle to adoption:
“But patients
don’t understand
this stuff.”
It’s perverse
to keep people
in the dark
and call them ignorant
Corollary:
If the data’s unclear
let’s MAKE it clear
Like other industries do.
Thomas Goetz, Wired
Thomas Goetz, Wired “It’s time to redesign medical data”
Same data –
better software.
Information: clearer.
Consumer:
informed, enabled.
Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com
Why not “Google Earth for my body”?
OsiriX
Dr. Eric Topol
iPhone EKG??
12/3/12:
“FDA clears iPhone heart
monitor, doctors can pre-order”
Who gets to say what value
is, in the first place??
You know
it’s a revolution
when…
How a kidney cancer wife
found the info she needed
• No insurance;
no treatment. Then:
• Three bad hospitals;
no help. Then:
• A friend said
“I know a guy...
on Twitter”
Regina Holliday’s
Medical Mural Advocacy Project
The Walking Gallery ReginaHolliday.blogspot.com
Information makes a difference.
And finally:
recognition
from the
establishment
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
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.
October 2007
2.8 e-Patient Years in Pictures…
December 2006 May 2009
JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
[email protected] Skype: ePatientDave
Let Patients Help
JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDave
[email protected] Skype: ePatientDave
e-Patients Can Help
Improve Healthcare
Case Study #3:
Hugo Campos wants his ICD data
Full, unrestricted & convenient access.
Doctor Experience
Patient Experience
$99 Activity Fitbit
$129 Blood Pressure Withings BP Monitor
Weight Withings WiFi Scale
$159
$149 Sleep Zeo Sleep Manager
No data
Implanted Cardiac Defibrillator
$30,000
Raw data
JAMIA, 1997
Dutch IVF program
had an insane idea
• Give patient couples
a wiki, and six months
to talk amongst them-
selves. The promise:
• “We’ll give you anything
you decide – your top
ten choices. Unedited.”
Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count it
if a puncture or a replacement has taken place.
• I want empathy from my doctor,
not just technical or financial information.
• I want separate waiting rooms for pregnant women
and patients with a fertility treatment
• I want more time to make an appointment,
even in the evening.
“Data Liberación”
Todd Park Innovator
Entrepreneur
HHS Chief Tech Officer
US Chief Tech Officer
How to start?
Here’s the
magic incantation
“I’m the kind of patient
who likes to understand
as much as I can
about my health.”
“Could I ask
some questions?”
Obstacle to adoption:
“Patients will
flood us with
time-wasting
questions.”
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… – 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