“e-Patient Dave” deBronkartTwitter: @ePatientDave

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

Four Laws ofTransformationandThree Diseases(and some traps)

Equipped

EngagedEmpoweredEnabled”

Doc Tom said,“e-Patients are

Four lawsand three diseases

(and some traps)

First law of transformation:Patients are the ultimate stakeholder.

TRAP: They’re often left out of discussions.

Second law of transformation:Patient is not a third person word.

Your time will come.

TRAP to avoid:“We’ll all be patients someday”

Sorry! Wishful thinking.

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company’s

web site

Median Survival:24 weeks

How can this be??

Because of the Web, patients can connect to information and each other

Third law of transformation:We perform better

when we’re informed better.

Corollary:It’s perverse to keep us in the dark

then call us ignorant.

Reality:HUGE cultural resistance to autonomy.

We must fight back.

Halamka not one has requested

Patientsite 2

We say: “Gimme My DaM Data”dave.pt/datasong

W e d e m a n d a

MEDICALRECORDSPIGOT!It’s all about ME, so it’s MINE!

Take action: bit.ly/healthspigot

TRAP:Objection: “Fine for you Dave,

but my patients aren’t like you”

Financially too:It’s perverse to keep us uninformed

then conclude we’re ignorant.

Disease 2

“We don’t know. Ask your plan.”

“We don’t know. Ask your plan.”

“We don’t know. Ask the doctor.”

Social media gave me an optionnobody had mentioned

clearhealthcosts

clearhealthcostsFact:Women manage most healthcare.Ask them what they need.

Law 2 redux:

“Your time will come”:

A very personalhealth behaviors story

(disease #3)

2009

November 2014

I know: Gadgets!!

Withings Wi-Fi scaleFitness wristband & heart band

I know: Gadgets!!

Withings Wi-Fi scaleFitness wristband & heart band

LESSON:Information alone doesn’t

change behavior

I know: Gadgets!!

Withings Wi-Fi scaleFitness wristband & heart bandYMCA Diabetes Prevention Program(food training & physical activity)MyFitnessPal diet tracking appStrong support from my spouse

OMG, I’m a runner now (at 65!)

p.s.: My providers can’t see this in their computers!

OMG, I’m a runner now (at 65!)

TRAP:The greatest cultural block

to e-patients being welcomed:

TRAP:The greatest cultural block

to e-patients being welcomed:A false sense of certainty.(“Trust authority, not others”)

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 editorof the British Medical Journal, 2009

Richard Smith25 year editor of the BMJ

Marcia AngellFormer NEJM editor-in-chief

Richard HortonCurrent editor-in-chief,The LancetApril 2015

If you’re the onewho’s in trouble,

it matterswhether it’s reliable!

@AaronColemanon medium.com

@AaronColemanon medium.com

The crisis in certainty:Who peer reviews this stuff??

And now,the Holy Grail

for finding value:

To see the future, don’t ask incumbents.

(The fourth law of transformation)

To see the future, don’t ask incumbents.

Ask the people with the problem.

The old (1871): Oliver Wendell Holmes

“Your patient has no more right to all the truth you know than he has to all the medicine in your saddle-bags. He should get only just so much as is good for him.”

Current information-powered e-patient reality:

Hugo Campos andDana Lewis

Hugo Campos wants his ICD data

Kardia (née “AliveCor”): Smartphone ECG

#OpenAPS & @DanaMLewis(Open Source Artificial Pancreas System)

“Quantified Self” #OpenAPS

Public Health conferenceSan Diego, May 18 (n=1)*59 (n=1)*59

November 2: *142

Many are better controlledthan we with a working pancreas are

“But culture changeis HAAARRRRD.”

“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

Personally, I love medicine.

W e d e m a n d a

MEDICALRECORDSPIGOT!It’s all about ME, so it’s MINE!

Take action: bit.ly/healthspigot