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“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
How Patient Engagement
is Changing What’s
Possible
1
Patient is not
a third person word.
Your time will come.
People perform better
when they’re
informed better.
It’s perverse
to keep people
in the dark
and call them ignorant
Corollary:
“It can be argued
that the largest
yet most neglected
health care
resource,
worldwide,
is the patient…”
e-Patients.net founder
Tom Ferguson MD1944-2006
Equipped
Engaged
Empowered
Enabled”
Doc Tom said,
“e-Patients are
JAMIA, 1997
Me? An indicator of the future??
• Who’s getting online:– 1989: Me (CompuServe sysop)
– 2009: 76% of US adults online
• 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
“My doctor prescribed ACOR”(Community of my patient peers)
ACOR patients 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
Question:
How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
Closed system Open network
Transformation of Knowledge Access
This is no insult
to physicians
It simply alters
what patients and families
can bring to the table
2014
Reported June 2015
The Institute of Medicine says(Best Care at Lower Cost, 2012)
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.
“How can patients participate if they can’t
see what I see?” – Dr. Danny Sands
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.
People perform better
when they’re
informed better.
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.”
VeHU:
Have you looked in your medical record?
Do you know if it has mistakes?
Who has the most at stake
with the accuracy,
completeness and
availability
of the medical record?
Put empowering
information
in consumers’
hands
Dr. Eric Topol
AliveCor: iPhone EKG12/3/12:
“FDA clears iPhone heart
monitor, doctors can pre-order”
Feb 2014: OTC
Withings
Withings Wi-Fi scale
Fitness wristband & heart band
Withings
Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class
(food training & physical activity)
MyFitnessPal diet tracking app
Strong support from my spouse
Withings
Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class
(food training & physical activity)
MyFitnessPal diet tracking app
Strong support from my spouse
My doctors can’t see this in their computers!
Urgency:
The Demographic
Crunch
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billion
End of World War II: ~2.3 billion
My classmate Jay
The demographic
imperative
The demographic
imperative
The demographic
imperative
October 2007
2.8 e-Patient Years in PicturesDecember 2006 May 2009
It’s great
to be alive.
“Your time
will come”
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
How Patient Engagement
is Changing What’s
Possible
52
