“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

How the Changing World Is Enabling New

Patient Partnerships

“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”

“People perform better when they’re informed better.”

How I came to be here• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discover & recovery

• 2008: E-Patient blogger

• 2009: ParticipatoryMedicine, Public Speaker

• 2010: full time

• 2011: international

The issue that’s central to our

thoughts today:

There’s been a profound shift

in where competence and information can

be found.

To be wrong about this(or simply out of date)

is to be unable to accurately plan

for the arriving future.

Fortunately,it’s not hard

to understandwhat’s newly possible.

e-Patients.net founderTom Ferguson MD1944-2006

EquippedEngagedEmpoweredEnabled”

Doc Tom said,“e-Patients are

Pt of future

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”

Multiple Tumors in Both Lungs Where’s This From??

Primary Tumor: Kidney

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company’s

web site

Median Survival:24 weeks

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

ACOR patients 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

How can it be

that the most usefuland relevant and

up-to-the-minute information

can exist outside of traditional channels?

© e-Patient Dave Re-use is permitted with this notice

Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)

Closed(system Open(network

Transformation(of(Knowledge(Access

Slide&by&@ePatientDave&2015&based&on&Engelen&&&Derksen&2010&at

Institute of Medicine – Sept 2012Major New Report: “Best Care at Lower Cost”

Patient-Clinician PartnershipsEngaged, empowered patients—A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

From the patient’s perspective,

what’s importantlooks different.

The #FirstMRI movement (2011)

Just ask us.Please.

“How can patients participate if they don’t have the information?” – Dr. Danny Sands

Who has the most at stakewith the accuracy, completeness and

availabilityof the medical record?

People perform betterwhen they’re

informed better.

It’s perverseto keep people

in the dark

and call them ignorant

Corollary:

How to start?Here’s the

magic incantation

“I’m the kind of patient

who likes to understand

as much as I can

about my health.”

“Could I asksome questions?”

Obstacle to adoption:“But patients

don’t understandthis stuff.”

Health literacy

Health clarity

If the data’s unclearlet’s MAKE it clear

Like other industries do.

Thomas Goetz, Wired

Thomas Goetz, Wired“It’s time to redesign medical data”

Same data –better software.

Information: clearer.

Consumer: informed, enabled.

Clarity is power.

Have you noticed –there are a lot more

old people?

Half of everyone who’s ever been 65 is alive today

Population today: ~7.0 billionEnd of World War II: ~2.3 billion

It’s becausey’all saved usfrom dying!!

My classmate Jay

The Futile Urgefor Certainty

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

Dr. Lindberg: 400 years

The lethal lag time: 2-5 years

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

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

Scurvy

264years!

My head hurts.Can we have some

fun now??

When assets digitize, things change fast.

Today,radiological image data

is being used for amazing things.

3d print baby’s hearthttp://3dprint.com/17443/3d-printed-heart-baby/

3d print heart for transplant

http://news.sky.com/story/1563135/surgeon-uses-3d-printed-heart-to-improve-surgery

I’m thinking –

“Someday, 3D printing will

move down marketto consumers”

“3D PrintYourself”

The obvious question:

“That’s cute,but what could anyone

really do with it?”

You never know.

That’s the point.

Liberate the data!

Steven Keating

Googling is a signof patient

engagement!

Predictably,the empire starts

to strike back.

It can look ludicrous.

Post(on(LinkedIn:dave.pt/belgiangoogle2The(ad(videos:dave.pt/belgiangoogle3dave.pt/belgiangoogle4

Meanwhile,evidence growsthat the current

paradigm is collapsing

Reported June 2015

Reported June 2015

Closed(system Open(network

Transformation(of(Knowledge(Access

Slide&by&@ePatientDave&2015&based&on&Engelen&&&Derksen&2010&at

October 2007

2.8 e-Patient Years in PicturesDecember 2006 May 2009

It’s greatto be alive.

“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

Yes, the Changing World Is Enabling New Patient

Partnerships