e-Patient Dave at British Columbia Patient Safety Quality Council, Feb. 2014

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Health & Medicine

Published on March 8, 2014

Author: ePatientDave

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e-Patient Dave talk at British Columbia Patient Safety Quality Council annual meeting, Feb. 2014, in Vancouver

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

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 underutilized 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

Doc Tom said, “e-Patients are e-Patients.net founder Tom Ferguson MD quipped E Engaged Empowered Enabled” 1944-2006

Pt of future

Me? An indicator •  Who’s getting online: –  1989: Me (CompuServe sysop) of the future?? –  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?

Dr. Lindberg: 400 years “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.

The lethal lag time: 2-5 years The time it takes after successful research is completed before publication is completed and the article’s been read. During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things.

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

Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search) Compare with - “To Err is Human” (98,000 deaths/yr Nov 1999)

“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

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( 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&

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?

@Xeni Live tweeting, 12-18-2011 “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 Next day: 12-19-2011 “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.”

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.

Objection: “My patients aren’t like that.” “They aren’t asking for this.”

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

My first year with the AliveCor Hugo Campos @hugooc HugoOC@gmail.com February 8, 2013

Next Lesson: When assets digitize, things move fast.

2.8 e-Patient Years in Pictures… December 2006 October 2007 May 2009

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

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