"i'm gonna live live live live live until i die" - palliative care
TRANSCRIPT
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
I’m gonna live, live, live, live, live till I die
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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
“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”
1969!
Richard Alpert
Tapes – 1980s • Conscious Aging • Approaching Death
Ram Dass
From Ram Dass I heard: “As I am now, so you will be Prepare yourself to follow me”
“Being born is like setting sail on a ship whose purpose is to go out in the ocean and sink.”
Whole Earth Catalog “Millennium Edition” 1994
“Health Online” – in 1996!
e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
Doc Tom said, “e-Patients are
Pt of future
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
ShiftingParadigm?
ì Informa(onasymmetryì Physicianasoracleì Comfortableì Aburden?
ì Informa(onsymmetryì Physicianaspartnerì Threateningvs.libera(ngì Physicianashealer
©Copyright2014D.Z.SandsandD.deBronkart,AllRightsReserved
The Engaged Patient, 2006 12 items in my pre-appointment “agenda” email
Corrected birthday text
The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007
“Yourshoulderwillbefine…butthere’ssomethinginyourlung”
Multiple tumors in both lungs
E-Patient Activity 1: Researching my condition
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company's
web site
Median Survival: 24 weeks
Facing the Reaper
My mother
My daughter
After the shock you’re left with the question:
What are my options? What can I do?
Get engaged.
Get it in gear.
Do everything you can.
Reality is what it is
Whether we know it or not And regardless of what we
think
Norman Cousins “Anatomy of an Illness” 1960s
Laugh Sing
Eat Like a Pig
E-Patient Activity 2: “My doctor prescribed ACOR”
(Now mostly moved to SmartPatients.com)
My patient peers told me: • “Welcome to the club…”
• “If you don’t want to die of kidney cancer…”
• “This is an uncommon disease – get to a hospital that does a lot of cases”
My patient peers told me: • 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
You have no idea what you’re capable of.
Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
Concurrent macro trends • The evolution of certainty (and authority)
– A telling sign: “data parasites”
• Trend 2: March of culture change: – 2012: Institute of Medicine, NLM – 2014: BMJ – 2015: Mayo
• Trend 3: Beehive etc
• Trend 4: Escape velocity
Bottom line: An unprecedented population
that needs and deserves to know about the palliative option in addition to the “curative track.”
Outreach:
Culturally it starts with listening to the ultimate stakeholder.
“I don’t know what I said
until I know what you heard”
The evolution of scientific certainty and thus authority
impact on patients è è à à
à à à current patient involvement è
trial management, e.g. consent, patient information leaflets,
trial adherence
patient recruitment e.g. providing information on clinical trials, advertising trials
clinical trial design
Clinical trials - where to get involved?
5/12/16
clinical question/ problem
doing things right à à à ß ß ß doing the right thing
© Bettina Ryll MD/PhD
September 29, 2014
Adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Flu vaccine, year 32: 55% doing it, 45% still not
Beta blockers, year 18: 62% doing it, 38% still not
Diabetic foot care, year 7: 20% doing it, 80% still not
Cholesterol, year 16: 65% doing it, 35% still not
Creative Commons Attribution / Share-Alike May be distributed with this license included
Scurvy
264 �years!
From The Fourth Paradigm by Microsoft Research
After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value.
Evidence on the upside of peer review is sparse, whereas evidence on the downside is abundant.
Most of what appears in peer reviewed journals is scientifically weak.
Richard Smith, 25 year editor of the British Medical Journal, 2009
Richard Smith 25 year editor of the BMJ
Marcia Angell Former NEJM editor-in-chief
Richard Horton Current editor-in-chief, The Lancet April 2015
Predictably, the empire starts
to strike back.
It can look ludicrous.
Post on LinkedIn: dave.pt/belgiangoogle2 The ad videos: dave.pt/belgiangoogle3 dave.pt/belgiangoogle4
Meanwhile, evidence grows that the current
paradigm is collapsing
Reported June 2015
Reported June 2015
The coming BOOM
in “market” for palliative care
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
dave.pt/olderyounger
“Longevity escape velocity” (Wikipedia)
“Longevity escape velocity” (Wikipedia)
“Longevity escape velocity” (Wikipedia)
“Longevity escape velocity” (Wikipedia)
“But culture change is
HAAAARRRD”
October 2007
2.8 e-Patient Years in Pictures December 2006 May 2009
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
I’m gonna live, live, live, live, live till I die
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