CalOHII Transformation summit
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Transcript of CalOHII Transformation summit
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“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Health Care is Transforming through Participatory Medicine
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If you live long enough,things change.
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Flexner Report,
1910“On the whole,
far too little clinical material under proper control
is offered.”
(Specifically,patients)
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“I want to note especially the importance of the resource
that is most often under-utilized in our information systems –
our patients”
Charles Safran MD, Beth Israel Deaconess quoting his colleague, Warner Slack MDTestimony to the House Ways & Means subcommittee on health, 2004
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My, how timeshave changed.
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How I came to be here
• High tech marketing• Data geek; tech trends; automation
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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: ParticipatoryMedicine, Public Speaker
• 2010: full time
• 2011: international
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Foundation Principle:
“Patient” is not a third person word
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Ask:
What would you wantif your child were dying?
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e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
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Pt of future
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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 weddingsin the U.S. met online
– 2011: One in five couplesmet online
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The Engaged Patient12 items in my pre-appointment “agenda” email
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The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your shoulderwill be fine …but there’s something in your lung”
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Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival:24 weeks
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After the shockyou’re left with the
question:What are my options?
What can I do?
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Get engaged.
Get it in gear.
Do everything you can.
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E-Patient Activity 2:“My doctor prescribed ACOR”
(Community of my patient peers)
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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
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Surgery & Interleukin worked.Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
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Question:
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How can it be
that the most usefuland relevant and
up-to-the-minute information
can exist outside of traditional channels?
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Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
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“The emerging world of the e-patient cannot be fully
understood and appreciated in the context of
pre-internet medical constructs.”
2004
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Thesis:People perform betterwhen they’reinformed better.
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Corollary:It’s perverseto keep people in the darkthen call themclueless.
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Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billionEnd of World War II: ~2.3 billion
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My classmate Jay
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The demographic imperative
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The demographic imperative
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The demographic imperative
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Next Lesson:Get Involved in Your Data.
Health InformationIntegrity Matters.
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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.”
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Foundation Principle:
“Patient” is not a third person word
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Next lesson:When assets digitize,
things change fast.
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Dr. Eric Topol
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AliveCor: iPhone EKG12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”Feb 2014: OTC
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New I.P. decision on patient data access
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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
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Clarityis Power
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W e d e m a n d a
MEDICALRECORDSPIGOT!It’s all about ME, so it’s MINE!Take action: bit.ly/healthspigot
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But remember –information alone
doesn’t change behavior
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Withings
WithingsWi-Fi scale
Fitness wristband & heart band
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Withings
WithingsWi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class(food training & physical activity)
MyFitnessPal diet tracking appStrong spousal support
My doctors can’t see this in their computers!
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Wil l iam Gibson
“The future is here –it’s just not evenly distributed yet”
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October 2007
2.8 e-Patient Years in Pictures…December 2006 May 2009
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“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Health Care is Transforming through Participatory Medicine
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Closing panel:Where does this leave us?
• David Lindeman, AARP board member• e-Patient Dave
• Beth Abbott – California Patient Advocate• Liz Helms, President and CEO, California
Chronic Care Coalition• Discuss!
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Four quick lessonsI wish I’d said
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#1: Improving healthcarewill not happenby poking into
the money.
Something thereis stuck or broken.
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ClearHealthCosts.com
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#2: That clashing soundis the collision
of two discordantparadigms
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1957
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1962
“Kuhn thought not only that there are scientific revolutions but also that they have a structure.”
-- Ian Hacking’s introduction to the 50th anniversary edition, 2012
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Stages a scientific field goes through• Normal science• Puzzle solving• Paradigm• Anomaly• Crisis• Revolution
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“Kuhn’s insistence that a paradigm shift was a mélange of sociology, enthusiasm and scientific promise, but not a logically determinate procedure, caused an uproar”-- Wikipedia
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Many frameworks
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Many conceptions of patients’ nature
• Compliant?
• Autonomous?
• Collaborative?
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Result:
• Inconsistent standards of practiceunwarranted by any evidenceregarding what’s appropriate to expect from patients
• Lack of policy supportfor patient and family engagement
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“The emerging world of the e-patient cannot be fully
understood and appreciated in the context of
pre-internet medical constructs.”
2004
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#3: Culture change is possible. Melissa was right:
parallels with feminism.
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#4: Kyra was right.
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The difficulty of “Easy level”
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Mental Health issues: Integration in primary care
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Specialties
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Specialties