"the changing world is enabling new patient partnerships"
TRANSCRIPT
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
How the Changing World Is Enabling New
Patient Partnerships
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
“People perform better when they’re informed better.”
How I came to be here• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discover & recovery
• 2008: E-Patient blogger
• 2009: ParticipatoryMedicine, Public Speaker
• 2010: full time
• 2011: international
The issue that’s central to our
thoughts today:
There’s been a profound shift
in where competence and information can
be found.
To be wrong about this(or simply out of date)
is to be unable to accurately plan
for the arriving future.
Fortunately,it’s not hard
to understandwhat’s newly possible.
e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
Pt of future
The Engaged Patient12 items in my pre-appointment “agenda” email
The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your&shoulderwill&be&fine&…but&there’s&something&in&your&lung”
Multiple Tumors in Both Lungs Where’s This From??
Primary Tumor: Kidney
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 usefuland relevant and
up-to-the-minute information
can exist outside of traditional channels?
© e-Patient Dave Re-use is permitted with this notice
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
Institute of Medicine – Sept 2012Major New Report: “Best Care at Lower Cost”
Patient-Clinician PartnershipsEngaged, 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.
From the patient’s perspective,
what’s importantlooks different.
The #FirstMRI movement (2011)
Just ask us.Please.
“How can patients participate if they don’t have the information?” – Dr. Danny Sands
Who has the most at stakewith the accuracy, completeness and
availabilityof the medical record?
People perform betterwhen they’re
informed better.
It’s perverseto keep people
in the dark
and call them ignorant
Corollary:
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 asksome questions?”
Obstacle to adoption:“But patients
don’t understandthis stuff.”
Health literacy
Health clarity
If the data’s unclearlet’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.
Clarity is power.
Have you noticed –there are a lot more
old people?
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billionEnd of World War II: ~2.3 billion
It’s becausey’all saved usfrom dying!!
My classmate Jay
The Futile Urgefor Certainty
“If I read two journal articles every night,at the end of a year I’d be 400 years behind.”
Dr. Lindberg: 400 years
The lethal lag time: 2-5 years
The time it takes after successful research is completedbefore publication is completed and the article’s been read.
Adoption of new practices years after discoveryThe “17 years” thingFrom A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Flu(vaccine,(year(32:(55%(doing(it,(45%(still(not
Beta(blockers,(year(18:(62%(doing(it,(38%(still(not
Diabetic(foot(care,(year(7:(20%(doing(it,(80%(still(not
Cholesterol,(year(16:(65%(doing(it,(35%(still(not
Creative Commons Attribution / Share-AlikeMay be distributed with this license included
Scurvy
264years!
My head hurts.Can we have some
fun now??
When assets digitize, things change fast.
Today,radiological image data
is being used for amazing things.
3d print baby’s hearthttp://3dprint.com/17443/3d-printed-heart-baby/
3d print heart for transplant
http://news.sky.com/story/1563135/surgeon-uses-3d-printed-heart-to-improve-surgery
I’m thinking –
“Someday, 3D printing will
move down marketto consumers”
“3D PrintYourself”
The obvious question:
“That’s cute,but what could anyone
really do with it?”
You never know.
That’s the point.
Liberate the data!
Steven Keating
Googling is a signof patient
engagement!
Predictably,the empire starts
to strike back.
It can look ludicrous.
Post(on(LinkedIn:dave.pt/belgiangoogle2The(ad(videos:dave.pt/belgiangoogle3dave.pt/belgiangoogle4
Meanwhile,evidence growsthat the current
paradigm is collapsing
Reported June 2015
Reported June 2015
Closed(system Open(network
Transformation(of(Knowledge(Access
Slide&by&@ePatientDave&2015&based&on&Engelen&&&Derksen&2010&at
October 2007
2.8 e-Patient Years in PicturesDecember 2006 May 2009
It’s greatto be alive.
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Yes, the Changing World Is Enabling New Patient
Partnerships