"i'm gonna live live live live live until i die" - palliative care

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

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 dave@epatientdave.com

I’m gonna live, live, live, live, live till I die

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