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“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com / ePatientDave LinkedIn.com / in / ePatientDave
[email protected]
You Are Vital to the Future of Healthcare
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Foundation Principle 1
Patient is not a third person word.
Your time will come.
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Foundation Principle 2
A pivotal force:
The urge to care for our children and elders
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1 + 2 equals:
Think about this in terms of your own kids
and your own parents.
(And maybe yourself.)
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Foundation Principle 3
Everyone performs better
when they’re better informed.
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Someday you’ll really care
how well informed the care team is.
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How I came to be here • High tech marketing • Data geek; tech trends; automation • 2007: Cancer kicker
• 2008: E-Patient blogger
• 2009: Participatory Medicine, Public Speaker
• 2010: full time
• 2011: international
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“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
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Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
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e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
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e-Patient White Paper
e-patients.net
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Pt of future
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Me? An indicator of the future??
• Who’s getting online: – 1989: Me (CompuServe sysop) – 2009: 76% 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
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JAMIA, 1997
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The Engaged Patient 12 items in my pre-appointment “agenda” email
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The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder will be fine … but there's something in your lung”
Danny’s skill in talking with me
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Multiple tumors in both lungs Where’s This From??
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Primary Tumor: Kidney
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E-Patient Activity 1: Researching my condition
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Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company's
web site
Median Survival: 24 weeks
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Facing the Reaper
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My mother
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My daughter
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After the shock you’re left with the question:
What are my options? What can I do?
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Get engaged.
Get it in gear.
Do everything you can.
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E-Patient Activity 2: “My doctor prescribed ACOR”
(Community of my patient peers)
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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
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E-Patient Activity 3: Reading (and sharing)
my hospital data online
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E-Patient Activity 4: My own social support network
(CaringBridge.org - family and friends - journal & guestbook)
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E-Patient Activity 5: Tracking my Data
During a serious disease, the chance to be engaged (or to help) is a huge mood booster, infinitely better than “I'm helpless / there's nothing I can do”
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Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
AMAZING surgery! AMAZING treatment AMAZING care
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Question:
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How can it be
that the most useful and relevant and
up-to-the-minute information
can exist outside of traditional channels?
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Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
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“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
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Any clinician whose sense of self-worth
depends on knowing everything
is in big trouble.
Lesson learned:
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It’s no failure on the clinician’s part
if a patient’s seen something they haven’t.
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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.
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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)
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“It may be more dangerous
not to google “your condition.”
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“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.
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VA’s “Blue Button” (and DoD & Medicare)
2012: 1 million + Automatic!
“The great thing about a market: you don't need a central plan because i have a dollar in play - i'll work it out.
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OpenNotes
What happens when patients see
their doctors’ notes?
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Announced this past Monday
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• 99% of patients wanted to continue"
• 17-26% of docs preferred not to continue…"– But when given the chance to stop, none did!
• 85-89% of patients said availability of open notes would influence their choice of providers and health plans"
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Obstacle to adoption: “But patients
don’t understand this stuff.”
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If the data’s unclear let’s MAKE it clear
Like other industries do.
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Thomas Goetz, Wired “It’s time to redesign medical data”
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Thomas Goetz, Wired “It’s time to redesign medical data”
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Same data – better software
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Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com
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Why not “Google Earth for my body”?
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Same data – better software
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The information’s clearer
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The family’s enabled and empowered.
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Health on the Internet: Separating the Gold from the Garbage
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Nov. 2007:
This googling patient was a nightmare
(Title should have been “When the patient is a
yahoo”!)
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o Feb. 2010:
Sites like ACOR & PatientsLikeMe:
patients are creating value by
connecting
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Jan. 2011: Googling patient
helps doc find correct diagnosis
more quickly
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e-Patient families need
information coaches.
That would be you.
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http://b i t .ly/gold from garbage
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“All knowledge is in constant beta”
Gilles Frydman, ACOR founder ICSI / IHI Colloquium, May 2010
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Autopsy shows ...
10-15% of diagnoses were wrong (So how could the treatments be right??)
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Autopsy shows ...
10-15% of diagnoses were wrong (So how could the treatments be right??)
He wrote his epilogue to patients:
Questions for partnering with your providers on “What else could this be, doc?”
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“Retraction Watch” blog
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Informed Medical Decision Making
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“Ultimately, it turned out to be the trade-off between peeing better and sex.”
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“And when it was stated in those terms, SDM flowed into the conversation.”
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Adoption of new practices years after discovery
From 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-Alike May be distributed with this license included
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What is the standard of care
for condition x??
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Great way medlibs can enable families:
populate StandardsOfCare.org
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Charlene Li (“Groundswell”) “Social networks
will be like air”
Web 2.0: “When the web began to harness the intelligence of its users” – Tim O’Reilly
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“Data Liberación”
Todd Park Innovator Entrepreneur HHS Chief Tech Officer US Chief Tech Officer
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Patients Like Me
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Obstacle: “I hate to bother you...”
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BOTHER US!
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Let’s get bothered! bit.ly / botheramedlib
To get bothered: bit.ly / bother-signup
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You know it’s a movement
when the artists and musicians show up
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Regina Holliday’s Medical Mural Advocacy Project
The Walking Gallery ReginaHolliday.blogspot.com
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The hospital transmitted every condition I ever had, with no dates;
all conditions were shown as current
“When e-Patient Dave pushed the button to send his data to Google Health, what happened was front page news.”
False medication warning
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Blog to print New media gave me “freedom of the press”
Traditional media gave me credibility and impact
And a conference...
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Why?? ...
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Amazingly, concerned and activated families
do look for health information!
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It’s the e-Patient
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MOVIE
bit.ly / DataSong
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Best Care at Lower Cost Institute of Medicine – Sept 2012
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2.8 e-Patient Years in Pictures… December 2006 October 2007
September 2009
May 2009
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“e-Patient Dave” deBronkart Twitter: @ePatientDave
facebook.com / ePatientDave LinkedIn.com / in / ePatientDave
[email protected]
You Are Vital to the Future of Healthcare
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May You Get Bothered a Lot.
bit.ly / botheramedlib