e-patients: empowered, engaged, equipped, enabled · e-patients.net founder tom ferguson md...

“e-Patient Dave” deBronkart

Twitter: @ePatientDave

facebook.com/ePatientDave

LinkedIn.com/in/ePatientDave

dave@epatientdave.com

e-Patients:Empowered, Engaged, Equipped,Enabled

e-Patients.net founder

Tom Ferguson MD1944-2006

Equipped

Engaged

Empowered

Enabled”

Doc Tom said,

“e-Patients are

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 speaking

• 2010: Full time

• 2011: international

• 2012: med schools, advisory, consult

• 560+ events, 17 countries, 1400 blog posts, 11 universities, 18 articles, 2 book chapters

What data are you

“analyticking”?

What data are you

’lycking?

Who said which fields

are worth ’lycking?

For whose benefit

are you ’lycking it?

Have you checked

to see if the data

are CLEAN enough

to be ’lycked?

Medicine: Miracles.

Health IT: Not so much.

January 2008: Suspicious

February 2009

The hospital transmitted every

condition I ever had, with no dates;

all conditions were shown as current

“When e-Patient Dave pushed the button to send his data

to Google Health, what happened was front page news.”

False medication warning

Lesson:

Unmanaged data quality

produces

trainwrecks

Data quality risks:

•Physician errors

•Clerical errors

•“Tasty delicious

baloney”(upcoding)

VeHU:

Have you looked in your medical record?

Do you know if it has mistakes?

We are witnessing

the evolution of

scientific certainty

and thus authority

“The Wicked Bible”(1631)

New technology

brings new power

and new risks.

Expect it!

Plan for it.

Don’t be surprised.

You can’t handle nicholsonYou can’t

HANDLE

the

Helvetica!

“How can patients participate

if they can’t see what I see?” – Dr. Danny Sands

Paternal caring

“No, honey –

you don’t know

what you need.”

“I’ll take care of you.”

Sensible – up to a point

“I’ll decide for you.”

Zoe

When does

autonomy

become

appropriate?

Because of the Web, patients can

connect to information and each other

Social Media: Information Capillaries

“The emerging world of the

e-patient cannot be fully

understood and appreciated

in the context of

pre-internet medical

constructs.”

2001

Transformation of Knowledge Access

Slide by @ePatientDave 2015 based on

Engelen & Derksen 2010 at

Closed system Open network

Slide by @ePatientDave 2015

based on Engelen & Derksen 2010 at

Transformation of Knowledge Access

Predictably,

the empire starts

to strike back.

It can look ludicrous.

Meanwhile,

evidence grows

that the current

paradigm is collapsing

Reported June 2015

Reported June 2015

Scurvy

264years!

Adoption of new practices

years after discovery

The “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-Alike

May be distributed with this license included

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 Smith25 year editor of the BMJ

Marcia

AngellFormer NEJM

editor-in-chief

Richard HortonCurrent editor-in-chief,

The Lancet

April 2015

Let’s meet some

highly activated

e-patients of today.

Hugo Campos wants his ICD data

Hugo iceberg

Sara red dot

Sara Riggare, Stockholm

Hugo Campos

@hugooc

HugoOC@gmail.com

My first year with

the AliveCor

February 8, 2013

#DIYPS: Open Source(“Do-it-yourself Pancreas System”

“Quantified Self” #OpenAPS

Public Health conferenceSan Diego, May 2016 (n=1)*59 (n=1)*59

August 2016: (n=1)*103

May 3, 2017: (n=1)*278

Oct 3, 2017: (n=1)*396

#OpenAPS users are tweeting

The question that means

our paradigm is off:

“?? How could that happen??”

April 1967 (fifty years ago):

“K. Switzer” runs the Boston Marathon

“Get the hell out

of my race!”

Remove constraints and the future changes

1967 1972 19992017

1967 1972 1999

Paradigm errors wrong expectations

2017

Adjust the paradigm

until the “anomalous”

becomes the expected.

Fix what was missing.

Remedy:

“A new scientific truth

does not triumph

by convincing its opponents

and making them see the light,

Max Planck Nobel Prize, 1918

“A new scientific truth

does not triumph

by convincing its opponents

and 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 opponents

and 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

“A new scientific truth

does not triumph

by convincing its opponents

and 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

Be careful

what you ’lyck.

It might be dirty.

“e-Patient Dave” deBronkart

Twitter: @ePatientDave

facebook.com/ePatientDave

LinkedIn.com/in/ePatientDave

dave@epatientdave.com

e-Patients:Empowered, Engaged, Equipped,Enabled

America’s Institute of Medicine – Sept 2012

Major New Report: “Best Care at Lower Cost”

Yes, the IOM itself

says e-patients are an essential part

of tomorrow’s healthcare.

Patient-Clinician Partnerships

Engaged, 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.

shift Microsoft slide

“Patients are the

most under-used

resource in

healthcare”

Informatics pioneer

Dr. Warner Slack,

since the 1970s

72

What do we mean by

empowered?

Empowerment

“Increasing the capacity

of individuals or groups

to make choices [about what they want]

and to transform those choices

into desired actions & outcomes”

World Bank, 2002

What do we mean by

“engagement”?A practical working model

from citizen participation

Citizen Participation level 1:

“Here’s what we’re doing”

http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid

eshows/Public%20Policy%20Conflict.ppt

Citizen Participation level 2:“What do you think about what we’re doing?”

http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid

eshows/Public%20Policy%20Conflict.ppt

Citizen Participation level 3:

Involving the public in your work

http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid

eshows/Public%20Policy%20Conflict.ppt

As gorgeously

designed

Example of “consult”:

a sidewalk created

before consulting

the citizens.

As gorgeously

designed

What they would

have asked for

if they’d been

consulted(Design thinkers call this

“desire lines”)

Citizen Participation level 4:Deciding together what to do (and doing it)

http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid

eshows/Public%20Policy%20Conflict.ppt

Citizen Participation level 5:

Citizens calling the shots – full

power

http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slid

eshows/Public%20Policy%20Conflict.ppt

To move people up the ladder,

empower them:

“Increasing the capacity

of individuals or groups

to make choices [about what they want]

and to transform those choices

into desired actions & outcomes”

World Bank, 2002

Obstacle to adoption:

“My patients

aren’t like that.”

Are they ACTIVATED?

The PAM (Patient Activation Measure)

Patient Activation Measure (PAM): Activation is developmental

Source: J.Hibbard, University of Oregon

Level of activation is linked with each behavior

Source: US National sample 2004

90

Behaviors by Level of Activation Among Diabetes Patients

RWJ PeaceHealth Study 2006

© Insignia Health 2009

Behaviors in Medical Encounter by Activation Level

Health Affairs, March 2015

The Grim Reaper

My mother

My daughter

Transformation of Knowledge Access

Slide by @ePatientDave 2015 based on

Engelen & Derksen 2010 at

Closed system Open network

Slide by @ePatientDave 2015

based on Engelen & Derksen 2010 at

Transformation of Knowledge Access

OpenNotes

What happens when patients see

their doctors’ notes?

• 99% of patients wanted to continue

• 17-26% of docs preferred not to…– But when given the chance to stop, none

did

• 85-89% of patients said availability of

open notes would influence their

choice of providers and health plans