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“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Healthcare Systems are Starting to Listen
1
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
IOM 2012 report “Best Care at Lower Cost”
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.
The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder will 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
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
Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
Scurvy
264 ���years!
From The Fourth Paradigm by Microsoft Research
When assets digitize, things move fast.
#DIYPS (“Do-it-yourself Pancreas System”
#DIYPS (“Do-it-yourself Pancreas System”
Case Study: Hugo Campos wants his ICD data
Full, unrestricted & convenient access.
Doctor Experience
Patient Experience
Dr. Eric Topol
AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order” Feb 2014: OTC
People perform better when they’re
informed better.
“How can patients participate if they don’t have the information?” – Dr. Danny Sands
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
Empowerment “An empowering approach to participation treats poor people���as co-producers
with authority and control ���over decisions and resources
devolved to the lowest appropriate level.”
Empowerment “An empowering approach to participation treats patients���as co-producers
with authority and control ���over decisions and resources
devolved to the lowest appropriate level.”
Paternalistic caring
“No, honey – you don’t know what you need.”
“I’ll take care of you.”
Sensible – up to a point
“I’ll decide for you.”
Zoe When does autonomy become appropriate?
IOM “Best Care at Lower Cost” 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.
It’s great to be alive.
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Healthcare Systems are Starting to Listen
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