patient engagement is changing what's possible (e-patient dave at intersystems global summit...
TRANSCRIPT
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
How Patient Engagement is Changing What’s
Possible
1
Note my branding
Patient is not a third person word.
Your time will come.
People perform better when they’re
informed better.
It’s perverse to keep people
in the dark
and call them ignorant
Corollary:
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
JAMIA, 1997
The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder will be fine … but there’s something in your lung”
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
Question:
How can it be
that the most useful and relevant and
up-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)
Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
The IOM itself says e-patients are an
essential part of tomorrow’s healthcare.
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.
“How can patients participate if they can’t see what I see?” – Dr. Danny Sands
Put empowering information
in consumers’ hands
Dr. Eric Topol
AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”
“Data Liberación!”
Todd Park Innovator Entrepreneur HHS Chief Technical Officer US Chief Technical Officer
#DIYPS (“Do-it-yourself Pancreas System”
#DIYPS (“Do-it-yourself Pancreas System”
#DIYPS (“Do-it-yourself Pancreas System”
Innovator adopters use 85% solutions
Data quality is essential.
Let Patients Help.
“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.”
@Xeni Live 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.”
@Xeni Next 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.”
Urgency: The Demographic
Crunch
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billion End of World War II: ~2.3 billion
My classmate Jay
The demographic imperative
The demographic imperative
The demographic imperative
Who has the most at stake
with the accuracy, completeness and
availability of the medical record?
October 2007
2.8 e-Patient Years in Pictures December 2006 May 2009
It’s great to be alive.
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
How Patient Engagement is Changing What’s
Possible
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Note my branding