JAMIA, 1997 Let Patients Help Improve Safety

and Quality

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

Today’s Wall Street Journal

Yo, Wall Street: it ain’t just the VA!

Relation between cost & quality

Elliott Fisher at Health Datapalooza 6/2/14 (Answer: NO relation between cost & quality. Enormous variation!) (What if everyone started doing what the lower left does?)

Dea

th r

ate !

Cost of the care !

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

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

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

Equipped Engaged Empowered Enabled�

Doc Tom said, �e-Patients are

Pt of future

Me? An indicator of the future??

•  Who’s getting online: –  1989: Me (CompuServe sysop) –  2009: 76% 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 Patient 12 items in my pre-appointment �agenda� email

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

�Your%shoulder%%%will%be%fine%…%%%but%there's%%%%something%%%%in%your%lung�%

Danny’s skill in talking with me

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

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 shock you’re left with the question:

What are my options? What can I do?

Get engaged.

Get it in gear.

Do everything you can.

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 –  And one of them was at my hospital

E-Patient Activity 3: Reading (and sharing)

my hospital data online

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

Baseline: 39x43 mm 50 weeks: 20x12 mm

AMAZING surgery! AMAZING treatment AMAZING care

Question:

How can it be

that the most useful and relevant and

up-to-the-minute information

can exist outside of traditional channels?

�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)

�It may be 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.

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

No clinician can possibly perform to the top of their training if the data

they’re given is wrong.

“Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.”

“And this CT scan makes my butt look big.”

@Xeni Live tweeting, 12-18-2011

“So I figure out how to open my bone scan data. I look.”

“What the...” “What’s that ****-shaped ghost-shadow thing— it looks like I have a penis!”

“I call a hacker pal. ‘That, Xeni, is a ****.’” “I look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.”

@Xeni Next day: 12-19-2011

Pre-op: “At least you won’t be lopsided.” “What do you mean?” “You’re getting a bilateral mastectomy.” “No I’m not!” “That’s what came to us on this paper.”

Data quality is essential.

Let Patients Help.

“How can patients participate if they can’t see what I see?” – Dr. Danny Sands

Obstacle to adoption: “Patients will flood us with time-wasting

questions.”

OpenNotes

What happens when patients see

their doctors’ notes?

OpenNotes

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!

2012: recognition

from the establishment

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

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.

Gorgeous, wonderful new book by Parkinson patients

Final Lesson: When assets digitize,

things move fast.

Someday 3D printing will move downmarket

to consumer level

Oh wait…

October 2007

2.8 e-Patient Years in Pictures December 2006 May 2009

JAMIA, 1997 Let Patients Help Improve Safety

and Quality

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com