"e-Patients are Changing Healthcare": Public keynote at NI2016, Geneva
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Transcript of "e-Patients are Changing Healthcare": Public keynote at NI2016, Geneva
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
How e-Patients are changing healthcare
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How I came to be here • High tech marketing • Data geek; tech trends; automation • 2007: Cancer discovery & recovery
• 2008: E-Patient blogger
• 2009: Participatory Medicine, Public Speaker
• 2010: full time
• 2011: international
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
Me? An indicator of the future??
• Who’s getting online: – 1989: Me (CompuServe sysop) – 2009: 76% of US adults online
• 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 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
ACOR patients told me: • This is an uncommon disease –
get to a hospital that does a lot of cases
• There is 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
How can it be
that the most useful and relevant and
up-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. Even when lives are at stake.
Dr. Lindberg: 400 years
2013: 1100 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.
“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.
The IOM 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.
“Quantified Self” #OpenAPS Public Health conference San Diego, May 18 (n=1)*59
(n=1)*59
June 3, White House: *75
Withings Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class (food training & physical activity)
MyFitnessPal diet tracking app
Strong support from my spouse
My doctors can’t see this in their computers!
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
• 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
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.”
eHealth Law (2017) e-health-suisse.ch For patients: • Free, voluntary EHR • You define doctors’
access rights • See all data on portal For HCPs: • Hospitals: 2020 • Retirement homes 2022 • Cloud • Intercantonal data
sharing
How a kidney cancer wife found the info she needed • No insurance;
no treatment. Then:
• Three bad hospitals; no help. Then:
• A friend said “I know a guy... on Twitter”
Impliquons les Patients! • The French
print edition wants a publisher! Contact @tinaburger in Lausanne
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Let Patients Help improve healthcare
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