Post on 16-Jul-2015
transcript
JAMIA, 1997
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave
How Educated Consumers Can Change Healthcare
“Patient” is not a third person word
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
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com
e-Patient Boot Camp Athens 2013
Photo of the Acropolis here
“e-Patient Dave” deBronkart Twitter: @ePatientDave
Cows behind a veil of secrecy Reinhardt didn’t realize!
facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com
“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
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: 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??
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
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.
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
“Data Liberación!”
Todd Park Innovator Entrepreneur HHS Chief Technical Officer US Chief Technical Officer
“Information liquidity” transforms
what’s possible
Not liquid Liquid • Moving it takes effort
• Slow and predictable
• Arrival on unexplained “tracks” is suspicious
• Frictionless – controlling the flow takes effort
• Fast and unpredictable
• “Tracks” are everywhere
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)
- HHS Inspector General (15,000/mo Nov 2010)
“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.
Obstacle to adoption: “But patients
don’t understand this stuff.”
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.
Things look different when you get the center right
Source: Wikipedia, Copernican Revolution
Everyone’s saying “Patient engagement is the
blockbuster drug of the century”
Not so fast. Let’s look deeper.
Drugs have two components:
the Active Ingredient that produces the result,
and the Vehicle,
which carries the active ingredient to the point where it can act
to produce value.
Patient engagement per se
is just the vehicle. It enables potential value to reach the point of need.
But what’s the active ingredient??
What are the concrete, specific, real, tangible ways
that patient engagement genuinely alters value
in clinical and business reality?
People perform better when they’re
informed better.
It’s perverse to keep people
in the dark
and call them ignorant
Corollary:
What happens when a consumer
tries to be responsible about costs?
N.H. insurance shopping, 2011
Premium
Deduc+ble
Co-‐pay a4er
deduc+ble
Max OOP (deduc+ble + co-‐pay)
Stop-‐loss max (in-‐network +
out)
Op#on A $894
Op#on B $705
Op#on C $581
Op#on D $495
Op#on H $624
The choices they offered
Premium
Deduc+ble
Co-‐pay a4er
deduc+ble
Max OOP (deduc+ble + co-‐pay)
Stop-‐loss max (in-‐network +
out)
Op#on A $894 $1,000
Op#on B $705 $2,500
Op#on C $581 $5,000
Op#on D $495 $10,000
Op#on H $624 $5,950
The choices they offered
Premium
Deduc+ble
Co-‐pay a4er
deduc+ble
Max OOP (deduc+ble + co-‐pay)
Stop-‐loss max (in-‐network +
out)
Op#on A $894 $1,000 20%
Op#on B $705 $2,500 20%
Op#on C $581 $5,000 20%
Op#on D $495 $10,000 0%
Op#on H $624 $5,950 0%
The choices they offered
Premium
Deduc+ble
Co-‐pay a4er
deduc+ble
Max OOP (deduc+ble + co-‐pay)
Stop-‐loss max (in-‐network +
out)
Op#on A $894 $1,000 20% $3,500 $12,500
Op#on B $705 $2,500 20% $5,000 $12,500
Op#on C $581 $5,000 20% $7,500 $12,500
Op#on D $495 $10,000 0% $10,000 n/a
Op#on H $624 $5,950 0% $5,950 $12,500
I know – run some scenarios!
=IF(maxoop<J17+J18,maxoop,J17+J18)
I know – graph it!
My favorite complaint:
“Patients are the only ones who don’t have
any skin in the game” - Practice manager, quoted in
Health Leaders, Fall 2011
2011: EOB for a scan
Winter: Shingles vaccines
Speaking of skin in the game…
Doing what empowered buyers do dave.pt/skincancerRFP
Obstacle to adoption: “My patients aren’t asking
for this.”
And finally: recognition
from the establishment
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.
Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
October 2007
2.8 e-Patient Years in Pictures December 2006 May 2009
Thank you, medicine.
JAMIA, 1997
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave
How Educated Consumers Can Change Healthcare