are you ready to partner with empowered, engaged e-patients?
TRANSCRIPT
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Patients as Partners: the Power of Patient Engagement
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Are you ready to partnerwith empowered, engaged
“e-patients”?
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Achieving population healthis sure to bring you more of us.
How I came to be here
• High tech marketing• Data geek; tech trends; automation
• 2007: Cancer discovery & recovery• 2008: E-Patient blogger• 2009: Public Speaker
• 2010: full time
• 2011: international
The right of a desperate person to try to save themselves
(or their family)
Fundamental Principle #2:
e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
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
2007: My “Incidental Finding”Routine shoulder x-ray, Jan. 2, 2007
“Yourshoulderwillbefine…butthere'ssomethinginyourlung”
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival:24 weeks
My patient peers 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
How can it be
that the most usefuland relevant and
up-to-the-minute information can exist outside of
traditional channels?
Donald Lindberg MDDirector of the National Library of Medicine
“If I read two journal articles every night, at the end of a year I’d be 400 years behind.” (2004)
2013: • 2,200 articles are published every day• Doctors must know 10,000 conditions• Patients can focus only on their own.
Empowerment“Increasing the capacity of individuals or groups
to make choices [about what they want]
and to transform those choices into desired actions & outcomes”
World Bank, 2002
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Dutch IVF programhad an insane idea
• Give patient couples a wiki, and six months to talk amongst themselves. The promise:
• “We’ll give you anything you decide – your top ten choices. Unedited.”
Dutch IVF programhad an insane idea
• Give patient couples a wiki, and six months to talk amongst themselves. 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.
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.
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 roomsfor families who’ve conceived
Paternalistic caring
“No, honey –you don’t know what you need.”
“I’ll take care of you.”
Sensible – up to a point
“I’ll decide for you.”
“Quantified Self” #OpenAPS
Public Health conferenceSan Diego, May 18 (n=1)*59 (n=1)*59
August 13: *103
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billionEnd of World War II: ~2.3 billion
76
Geriatrics:“The art and scienceof modifying medicineso that it works better
for older peopleand for their families”
I know: Gadgets!!
Withings Wi-Fi scaleFitness wristband & heart bandYMCA Diabetes Prevention Program(food training & physical activity)MyFitnessPal diet tracking appStrong support from my spouse
At dx: Nov 2014, 231#:
Sept 2015, 203#:
August 5, 2016:• Labcorp: 5.7 (still pre)• Quest: 5.5 (not pre??)
The questionable fruits of compliance
5.9 (??!?)
5.8
• 99% of patients wanted to continue
• 17-26% of doctors 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
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Are you ready to partnerwith empowered, engaged
“e-patients”?
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Population healthis sure to bring you more of us.