Mississippi Hospital Association 6-5-2014
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JAMIA, 1997 Help in the new world of healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
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The event had a strong football theme so I drew some parallels with football legends who have overcome adversity ... including some from Ole Miss :-), as well as Doug Flutie's legendary Hail Mary pass in 1984
Transcript of Mississippi Hospital Association 6-5-2014
JAMIA, 1997Let Patients Helpin the new world
of healthcare
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
Triumphover
circumstance
“holy war”
1980: We were #1 in world sales
(Compugraphic)
1983 Liberty Bowl –Nasty
Circumstances• Average punt: 28 yards!• 5 touchdowns …• … only ONE extra point• Final: Notre Dame 19, BC 18• The MVP was the losing
quarterback
Doug Flutie– 16 for 37 (43%)– 3 TDs– 2 INT
NCAA passer rating:124.43
Evaluations can be rough
Some NFL passers who’ve had a ZERO rating:• Earl Morrall,
9/19/65• Bob Griese,
9/28/68• Johnny Unitas,
10/20/68• Len Dawson,
11/22/70
• Warren Moon(2x)
• Norm Snead (2x)
• Joe Namath (2x)
• Terry Bradshaw (3x)
Then, triumphs:• Franchise records for
– Most passing yards– Most touchdowns– Most completions
• 2 Super Bowl wins– Beat my Patriots both
times– And MVP both times
• Only QB ever to get 4900 yards & Super Bowl same year
Eli Manning
Two other Ole Miss “winners” of NFL zero ratings
who went on to triumph
Two other Ole Miss “winners” of NFL zero ratings
who went on to triumphThen, triumphs:• Franchise records for
– Most passing yards– Most touchdowns– Most completions
• 2 Super Bowl wins– Beat Patriots both times– And MVP both times
• Only QB ever to get 4900 yards & Super Bowl same year
Eli Manning His dad Archie
3:41 video of Doug Flutie’s Hail Mary pass,
Thanskgiving Friday, 1984http://dave.pt/Flutie
We were #1
But then: hello.
Triumphover
circumstance
Foundation Principles
• Patient is not a third person word– Your time will come
• Patients are the ultimate stakeholder– Yet they’re often omitted from planning the
future• A pivotal force: The urge to care
for our children and elders is strong.
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
e-Patients.net founderTom Ferguson MD 1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
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
The Incidental FindingRoutine 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??
Primary Tumor: Kidney
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
After the shockyou’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 bethat the most useful
and relevant andup-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.
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 bemore dangerous
not to google your condition.”
“These conclusions are no more anti-doctor
or anti-medicinethan Copernicus and
Galileo were anti-astronomer.”
Patients can simply contribute more today than
in the past.
Because of the Web, Patients Can Connect to
Information and Each Other (and other
Providers)
“But it’s HARDto change ourattitudes and
habits”
It can be done.
“How can patients participate if they can’t see what I see?” – Dr.
Danny Sands
Obstacle to adoption:“Patients will flood us with time-wasting questions.”
OpenNotes
What happens when patients
see their doctors’ notes?
OpenNotes
• 99% of patients wanted to continue• 17-26% of docs preferred not to…
–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
No clinician can possibly
performto the top of their training if the data
they’re given is wrong.
“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.”
Data quality is essential.
Let Patients Help.
Urgency:The
Demographic Crunch
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
Dr. Eric Topol
AliveCor: iPhone EKG 12/3/12:
“FDA clears iPhone heart monitor, doctors can pre-order”Feb 2014: OTC
Final Lesson:When assets
digitize, things move fast.
Someday 3D printing
will move downmarket
to consumer level
Oh wait…
Dutch IVF programhad an insane idea
• Give patient couples a wiki, and six months to talk amongst them-selves. The promise:
• “We’ll give you anything you decide – your top ten choices. Unedited.”
Top things IVF patients asked for
• I want insurers to reimburse six attempts.
• I want insurance companies to only count it as an attempt if the embryo gets started.
• I want empathy from my doctor, not just technical or financial information.
• I want separate waiting rooms for families who’ve conceived
Patch Adams
October 2007
2.8 e-Patient Years in Pictures
December 2006
May 2009
Triumphover
circumstance
JAMIA, 1997Let Patients Helpin the new world
of healthcare
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
