discovering the e-patient movement - hospital council of … · 2019-12-19 · discovering the...

“e-Patient Dave” deBronkart Twitter: @ePatientDave

facebook.com/ePatientDave LinkedIn.com/in/ePatientDave

dave@epatientdave.com

Discovering the e-Patient Movement:

How Patient Engagement Can Improve Safety and Quality

“The resource that is most often under-

utilized in our information systems – our patients”

Charles Safran MD, Beth Israel Deaconess quoting his colleague, Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004

How I came to be here today

• High tech marketing (graphic arts)

• Data geek; tech trends; automation

• 2007: Cancer kicker 2008: E-Patient blogger

• 2009: – Society for

Participatory Medicine – Public speaking – Washington

• 2010: Full time

e-Patients.net founder Tom Ferguson MD 1944-2006

Equipped

Engaged Empowered Enabled”

Doc Tom said, “e-Patients are

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 Incidental Finding Routine shoulder x-ray, Jan. 2, 2007

“Your shoulder will be fine … but there’s something in your lung”

Multiple tumors in both lungs Where’s This From??

Primary Tumor: Kidney

Facing the Reaper

My mother

My daughter

Get engaged.

Get it in gear.

Do everything you can.

E-Patient Activity 1: Researching my condition

E-Patient Activity 2: “My doctor prescribed ACOR”

(Community of my patient peers)

ACOR members 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

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company’s

web site

Median Survival: 24 weeks

E-Patient Activity 3: Reading (and sharing)

my hospital data online

E-Patient Activity 4: My own social support network

(CaringBridge.org - family and friends - journal & guestbook)

E-Patient Activity 5: Tracking my Data

During a serious disease, the chance to be engaged (or to help) is a huge mood booster, infinitely better than “I’m helpless / there’s nothing I can do”

Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe

Baseline: 39x43 mm 50 weeks: 20x12 mm

How can it be

that the most useful and relevant and

up-to-the-minute information

can exist outside of traditional channels?

Because of the Web, Patients Can Connect to Information

and Each Other (and to Doctors)

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

It’s not humanly possible to keep up.

Dr. Lindberg: 400 years

The lethal lag time: 2-5 years

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

Patients have all the time in the world to look for such things.

The time it takes after successful research is completed before 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)

“Arguably it’s more dangerous

not to google “your condition.”

“These conclusions are no more anti-doctor

or anti-medicine

than Copernicus and Galileo ..were anti-astronomer.”

Patients can simply contribute more today than in the past.

“E” is not a new idea • Doctor Spock’s Baby and Child Care (1946)

• Our Bodies, Ourselves (1973) “We weren't encouraged to ask questions,

but to depend on the so-called experts,” Hawley told Women’s eNews.

“Not having a say in our own health care frustrated and angered us. We didn't have the information we needed, so we decided to find it on our own.”

So, how’s that workin’ out??

Can we make it easier to do

the right thing?

Announced this past Monday

• 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

Obstacle to adoption:

“But patients don’t understand

this stuff.”

If the data’s unclear let’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

Psoas muscle (My kidney tumor was encroaching on it) my rendering on VisibleBody.com

Why not “Google Earth for my body”?

Web 2.0: “When the web began to harness the intelligence of its users” – Tim O’Reilly

Compliance (Whose goal is it, anyway?)

Peter Margolis, Cincinnati Children’s

.5 x .5 = .25

Are we barking up the wrong tree?

Used with permission

Used with permission

Behavioral Economics • Loss aversion is stronger

than the desire to gain

• Cognitive framing; anchoring; ...

• But it’s tricky

• Even for really self-aware people, it’s not as easy as just giving them facts.

• That’s important for medicine.

Lesson learned: Genuine value can arise today

in places where it didn’t, years ago.

Exhibit: Duane Smith /

Gawande

What if his family had googled “splenectomy”?

What if the care team had shared the care plan?

Abington Memorial created one. (It’s just an EMR report)

Exhibit: Life-saving advice on my side effects

“Side effects are often severe and rarely fatal,

and include: ...”

Remedy: Ask my peers

17 first hand stories

Me: “Did being an engaged patient save me?”

Dr. McDermott: “I have no doubt the medicine

killed the tumors.” “But I don’t know if you could have

tolerated enough to do the job if you hadn’t gotten so involved”

Exhibit: Family and Nurse

Awareness of Standards of Care

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 ask some questions?”

You know it’s a movement

when…

Regina Holliday’s Medical Mural Advocacy Project

The Walking Gallery ReginaHolliday.blogspot.com

on.TED.com/Dave “Let Patients Help”

Amazingly, concerned and activated families

do look for health information!

It’s the e-Patient

MOVIE Video link:

bit.ly/DataSong

Click picture to view video at bit.ly/DataSong

And finally: recognition

from the establishment

Institute of Medicine – Sept ’12 Major new report: “Best Care at Lower Cost”

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

Discovering the e-Patient Movement:

How Patient Engagement Can Improve Safety and Quality

Who’s online

Hugo Campos wants his ICD data

Full, unrestricted & convenient access.

Doctor Experience

Patient Experience

$99 Activity Fitbit

$129 Blood Pressure Withings BP Monitor

Weight Withings WiFi Scale

$159

$149 Sleep Zeo Sleep Manager

No data

Implanted Cardiac Defibrillator

$30,000