Daniel Z. Sands, MD, MPHSociety for Participatory MedicineBeth Israel Deaconess Medical CenterHarvard Medical SchoolBoston, MA
© Copyright 2013 D. Z. Sands, All Rights Reserved
Introduction of e-Patient Dave
President John F. KennedyBerlin Wall, Jun 26, 1963
© Copyright 2013 D. Z. Sands, All Rights Reserved
All free men … are citizens of Berlin, and therefore … I take pride in the words “Ich bin ein Berliner!” Ich bin ein Berliner!
E-Patient DaveCirca 2010, as interpreted by Dr. Danny Sands, who shares this feeling
© Copyright 2013 D. Z. Sands, All Rights Reserved
All people … are or will be patients, and therefore … I take pride in the words “I am a patient!” I am a patient!
Former technology manager, working in industries as diverse as typesetting and SaaS
Became blogger, speaker, health policy advisor, and e-patient advocate after beating stage IV renal cell carcinoma in 2007
Co-founded Society for Participatory Medicine in 2009 and has helped lead organization—we are currently co-chairs of the board
Frequently quoted in media
TEDx talk “Let Patients Help” is in top half of most viewed TED talks
Frequent keynote presenter, occasionally with his PCP
Author of two books, including one as collaboration with his PCP
In 2009 HealthLeaders Media named Dave and his PCP to their annual list of “20 People Who Make Healthcare Better”
© Copyright 2012 D. Z. Sands, All Rights Reserved
Dave deBronkart, a.k.a., e-Patient Dave
“e-Patient Dave” deBronkart
Twitter: @ePatientDavefacebook.com/ePatientDave
LinkedIn.com/in/[email protected]
Information at thepoint where it’s needed can save
lives.
How I came to be here
• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discovery & recovery
• 2008: E-Patient blogger
• 2009: ParticipatoryMedicine, Public Speaker
• 2010: full time
• 2011: international
The only purposefor recording
information (on paper or electronic)is so someone can
read it back and act on it.
To do this with computers, we encode
itand decode it.
It matterswhether the picture
you get when you read it backmatches the picture
you intended when you stored it
Source: Wikipedia DIKW-diagram.png
e-Patients.net founderTom Ferguson MD 1944-2006
Equipped
Engaged
Empowered
Enabled”
Doc Tom said,
“e-Patients are
1998
Pt of future
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
2007: My “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??
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company's
web site
Median Survival:24 weeks
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
E-Patient Activity: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”
Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
Problem(?) Chronic Disease Epidemic
CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of DeathJones (2012) The Burden of Disease and the Changing Task of Medicine. NEJM
Used with permission of John O. Moore MD, PhD newmed.media.mit.edu
Problem(?) Chronic Disease Epidemic
CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of DeathJones (2012) The Burden of Disease and the Changing Task of Medicine. NEJM
Used with permission of John O. Moore MD, PhD newmed.media.mit.edu
My classmate Jay
Half of everyone who’s ever been 65 is alive
todayPopulation today: ~7.0 billionEnd of World War II: ~2.3 billion
Question:
How can it bethat the most useful
and relevant andup-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)
“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.
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)
“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.
Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
Liquiditytransforms
what’s possiblebecause it alters the
availabilityof a vital resource.
Information liquidity.
Data liquidity.
Not Liquid Liquid
• Moving it takes effort
• Slow and predictable
• Unexplained arrivals
are suspicious
• Frictionless – controlling the flow takes effort
• Fast and unpredictable
• “Tracks” everywhere, free
“Shift Index”
“We are shifting from a world where the key source of strategic advantage was in protecting and extracting value from a given set of knowledge stocks ...
“Shift Index”
“...into a world in which the focus of value creation is effective participation in knowledge flows.”
–Thomas Friedman Pulitzer prize winner (3x)
New York Times January 19, 2010
People perform better
when they’reinformed better.
What if the information they give you
is wrong?
VA’s Veterans eHealth University, 2012 – audience response:
Have you looked in your medical record? Do you know if it has
mistakes?
“Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.”“And this CT scan makes my butt look
big.”
@XeniLive tweeting, 12-18-2011
“So I figure out how to open my bone scan data. I look.”
“What the...” “What’s that ****-shaped ghost-shadow thing—it looks like I have a penis!”
“I call a hacker pal. ‘That, Xeni, is a ****.’”
“I look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.”
@XeniNext day: 12-19-2011
Pre-op: “At least you won’t be lopsided.”
“What do you mean?”“You’re getting a bilateral mastectomy.”
“No I’m not!”“That’s what came to us on this paper.”
Who has the most at stake
with the accuracy, completeness and
availabilityof the medical record?
Data quality is essential.
Let Patients Help.
“The Wicked Bible”(1631)
New: Patient chart notes
“My patients aren’t like that.”
“They aren’t asking for this.”
Objection:
Until people get experience,
they’re inexperienced!
It’s perverseto keep people
in the darkand call them
ignorant
Corollary:
Capture iNFORMATION about
the iNDIVIDUAL and
apply iNFORMATICS to
create iNTELLIGENCE that
drives iNNOVATION to
radically iMPROVE healthcare
Morris Collen turns 100
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Information at thepoint where it’s needed can save
lives.