“e-Patient Dave” deBronkartTwitter: @ePatientDave

facebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

e-Patients: Engaged, Empowered, Equipped, Enabled“Patient” is not a third person word

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

Two emerging changes

1. Technological evolution of what’s possibleenabled by IT

2. Sociological change: the “emancipation” of autonomous patients

The Walking GalleryReginaHolliday.blogspot.com

#PinkSocks

“Patients are the most under-used resource in healthcare”

Informatics pioneer Dr. Warner Slack,since the 1970s

6

Norman Cousins“Anatomy of an Illness”1960s

This evening, bear in mind1. Think about everything you hearwith YOU as the customer/patient.

What will you do?

2. How can we bring ASQ thinkingto the healthcare industry?

(especially overcoming foot-dragging)

“Patient” is not a third-person word.

Your time will come.

Always, always think how you will feel when it’s your child or your parent whose life is at stake

9

And, we are – you are –the ultimate stakeholder

Who else hasmore “at stake”

in how well healthcare works?

Yet we’re often excluded from talks with

“all stakeholders”

10

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 weddings

in the U.S. met online– 2011: One in five couples

met online

The Engaged Patient12 items in my pre-appointment “agenda” email

2007: My “Incidental Finding”Routine shoulder x-ray, Jan. 2, 2007

“Yourshoulderwillbefine…butthere'ssomethinginyourlung”

Multiple tumors in both lungs

Primary Tumor: Kidney

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

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.

“My doctor prescribed ACOR”(Community of my patient peers)

My patient peers 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

Surgery & Interleukin worked

How can it be

that the most usefuland relevant and

up-to-the-minute information can exist outside of

traditional channels?

Donald Lindberg MDDirector of the National Library of Medicine

“If I read two journal articles every night, at the end of a year I’d be 400 years behind.” (2004)

2012: • 2,200 articles / day• 10,000 conditions• Patients can focus on

just their disease.

The lethal lag time: 2-5 years

During this time, people who might have benefitted can die.

Patients have all the time in the worldto look for such things.

The time it takes after successful research is completedbefore publication is completed and the article’s been read.

Compare with

- “To Err is Human” (98,000 deaths/yr Nov 1999)

Death by Googling:Not.(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)

Because of the Web, Patients Can Connect to Information and Each Other

Closed system Open network

Transformation of Knowledge Access

Slide by @ePatientDave 2015Based on Engelen & Derksen, 2010

The Three L’s to knowif you’re an

Information Bloodhound

Problem 1:Information LATENCY

Scurvy

264years!

Microsoft

Adoption of new practices years after discoveryThe “17 years” thingFrom 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-AlikeMay be distributed with this license included

Problem 2:Information LABILITY

Problem 3:Information

LIQUIDITY

“Liquidity”transforms

what’s possible

Not liquid Liquid• Moving it takes effort

• Slow and predictable

• Arrivals on unexplained “tracks” are suspicious

• Frictionless – controllingthe flow takes effort

• Fast and unpredictable

• “Tracks” everywhere, free

Googlingis a sign of an

engaged patient!

“My patientsaren’t like that.Nobody’s asking

for this.”

OpenNotes

What happens when patients see their providers’

actual notes??

It’s perverse to keep someone in the dark

then say they’re ignorant.

“A new scientific truth does not triumph by convincing its opponentsand making them see the light,

Max Planck Nobel Prize, 1918

“A new scientific truth does not triumph by convincing its opponentsand making them see the light, but rather because its opponents eventually die,

Max Planck Nobel Prize, 1918

“A new scientific truth does not triumph by convincing its opponentsand making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”

Max Planck Nobel Prize, 1918

“e-Patient Dave” deBronkartTwitter: @ePatientDave

facebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

e-Patients: Engaged, Empowered, Equipped, Enabled“Patient” is not a third person word