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“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Enabling Ontario’s Residents Through
Personal Health Records
1
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
(and wearables and apps!)
2
Patient is not a third person word.
Your time will come.
People perform better when they’re
informed better.
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
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
Pt of future
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 Finding Routine shoulder x-ray, Jan. 2, 2007
“Yourshoulderwillbefine…butthere’ssomethinginyourlung”
Multiple tumors in both lungs
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?
E-Patient Activity 2: “My doctor prescribed ACOR”
(Now mostly moved to SmartPatients.com)
My patient peers 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?
“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.
“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.
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
What do we mean by
Empowered?
Empowerment “Increasing the capacity �of individuals or groups
to make choices [about what they want]
and to transform those choices �into desired actions & outcomes”
World Bank, 2002
What do we mean by
Engaged?
The state of patient engagement today: A puzzle with no agreed paradigm.
Angela Coulter
Angela Coulter Patient Engagement What Works ambulatory care 2012
Patient Activation Measure (PAM): What Does it Mean to Be Activated ?
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BehaviorsbyLevelofAc2va2onAmongDiabetesPa2ents
RWJ PeaceHealth Study 2006
© Insignia Health 2009
BehaviorsinMedicalEncounterbyAc6va6onLevel
But: the PAM is one of many
engagement frameworks
“Situational Awareness” is vital –
and there have been real changes in who CAN
get at SA data
Kardia (née “AliveCor”): Smartphone ECG
#DIYPS & @DanaMLewis (“Do-it-yourself Pancreas System”
#DIYPS (“Do-it-yourself Pancreas System”
We perform better when we’re
informed better.
But information alone doesn’t change
behavior
(as I found out)
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 spousal support
p.s.: My doctors can’t see this
in their computers!
OMG, I’m a runner now
October 2007 December 2006 May 2009
2.8 e-Patient Years in Pictures
Zoe When does autonomy become appropriate?
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Enabling Ontario’s Residents Through
Personal Health Data
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