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“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Health Care is Transforming through Participatory Medicine
If you live long enough,things change.
Flexner Report,
1910“On the whole,
far too little clinical material under proper control
is offered.”
(Specifically,patients)
“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
My, how timeshave changed.
How I came to be here
• High tech marketing• Data geek; tech trends; automation
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
Foundation Principle:
“Patient” is not a third person word
Ask:
What would you wantif your child were dying?
e-Patients.net founderTom Ferguson MD1944-2006
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: 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
The Engaged Patient12 items in my pre-appointment “agenda” email
The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your shoulderwill 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
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
Surgery & Interleukin worked.Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
Question:
How can it be
that the most usefuland 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)
“The emerging world of the e-patient cannot be fully
understood and appreciated in the context of
pre-internet medical constructs.”
2004
Thesis:People perform betterwhen they’reinformed better.
Corollary:It’s perverseto keep people in the darkthen call themclueless.
Half of everyone who’s ever been 65 is alive today
Population today: ~7.0 billionEnd of World War II: ~2.3 billion
My classmate Jay
The demographic imperative
The demographic imperative
The demographic imperative
Next Lesson:Get Involved in Your Data.
Health InformationIntegrity Matters.
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.”
Foundation Principle:
“Patient” is not a third person word
Next lesson:When assets digitize,
things change fast.
Dr. Eric Topol
AliveCor: iPhone EKG12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”Feb 2014: OTC
New I.P. decision on patient data access
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
Clarityis Power
W e d e m a n d a
MEDICALRECORDSPIGOT!It’s all about ME, so it’s MINE!Take action: bit.ly/healthspigot
But remember –information alone
doesn’t change behavior
Withings
WithingsWi-Fi scale
Fitness wristband & heart band
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!
Wil l iam Gibson
“The future is here –it’s just not evenly distributed yet”
October 2007
2.8 e-Patient Years in Pictures…December 2006 May 2009
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Health Care is Transforming through Participatory Medicine
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!
Four quick lessonsI wish I’d said
#1: Improving healthcarewill not happenby poking into
the money.
Something thereis stuck or broken.
ClearHealthCosts.com
#2: That clashing soundis the collision
of two discordantparadigms
1957
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
Stages a scientific field goes through• Normal science• Puzzle solving• Paradigm• Anomaly• Crisis• Revolution
“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
Many frameworks
Many conceptions of patients’ nature
• Compliant?
• Autonomous?
• Collaborative?
Result:
• Inconsistent standards of practiceunwarranted by any evidenceregarding what’s appropriate to expect from patients
• Lack of policy supportfor patient and family engagement
“The emerging world of the e-patient cannot be fully
understood and appreciated in the context of
pre-internet medical constructs.”
2004
#3: Culture change is possible. Melissa was right:
parallels with feminism.
#4: Kyra was right.
The difficulty of “Easy level”
Mental Health issues: Integration in primary care
Specialties
Specialties
