british columbia pt safety & quality council, feb. 2014

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JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave [email protected] Skype: ePatientDave Let Patients Help Heal Healthcare

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JAMIA, 1997

“e-Patient Dave” deBronkart Twitter: @ePatientDave

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

[email protected] Skype: ePatientDave

Let Patients Help Heal Healthcare

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

•  2008: E-Patient blogger

•  2009: Participatory Medicine, Public Speaker

•  2010: full time

•  2011: international

“I want to note especially the importance of 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

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: 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 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”&

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

Facing the Reaper

My mother

My daughter

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

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

Baseline: 39x43 mm 50 weeks: 20x12 mm

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.

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

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)

- HHS Inspector General (15,000/mo Nov 2010)

“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.

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.

Can we measure…

“Engaged, empowered patients”?

What Does it Mean to Be Activated ?

!Ac$va$on!Level!is!Predic$ve!of!Behaviors!

Research(consistently(finds(that(those(who(are(more(ac3vated(are:(

–  Engaged(in(more(preven3ve(behaviors(

–  Engaged(in(more((healthy(behaviors(

–  Engaged(in(more(disease(specific(self<management(behaviors(

–  Engaged(in(more(health(informa3on(seeking(behaviors(

(Ac3va3on(is(developmental(

Source: J.Hibbard, University of Oregon

Behaviors!in!Medical!Encounter!!by!Ac$va$on!Level!!

How engaged are YOU?

Urgency: The Demographic

Crunch

Problem(?) Chronic Disease Epidemic

CDC((2004)(Ten(Great(Public(Health(Achievements(in(the(20th(Century(&(Leading(Causes(of(Death(Jones((2012)(The(Burden(of(Disease(and(the(Changing(Task(of(Medicine.(NEJM&

Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu(

Problem(?) Chronic Disease Epidemic

CDC((2004)(Ten(Great(Public(Health(Achievements(in(the(20th(Century(&(Leading(Causes(of(Death(Jones((2012)(The(Burden(of(Disease(and(the(Changing(Task(of(Medicine.(NEJM&

Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu(

My classmate Jay

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

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

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

Can we measure…

Accurate, careful management

of important information?

“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.”

Who has the most at stake

with the accuracy, completeness and

availability of the medical record?

Data quality is essential.

Let Patients Help.

“My patients aren’t like that.”

“They aren’t asking for this.”

Objection:

Put empowering information

in consumers’ hands

Dr. Eric Topol

AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order” Feb 2014: OTC

Hugo Campos @hugooc

[email protected]

My first year with the AliveCor

February 8, 2013

Next Lesson: When assets digitize,

things move fast.

October 2007

2.8 e-Patient Years in Pictures… December 2006 May 2009

JAMIA, 1997

“e-Patient Dave” deBronkart Twitter: @ePatientDave

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

[email protected] Skype: ePatientDave

Let Patients Help Heal Healthcare