e-Patient Dave Midwest MLA 10-20-12

Copyright © 2012 e-Patient Dave Please contact via epatientdave.com before re-using

“e-Patient Dave” deBronkart Twitter: @ePatientDave

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

[email protected]

You Are Vital to the Future of Healthcare


Foundation Principle 1

Patient is not a third person word.

Your time will come.



A pivotal force:

The urge to care for our children and elders


1 + 2 equals:

Think about this in terms of your own kids

and your own parents.

(And maybe yourself.)



Everyone performs better

when they’re better informed.


Someday you’ll really care

how well informed the care team is.


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

•  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


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


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

Equipped Engaged Empowered Enabled”

Doc Tom said, “e-Patients are


e-Patient White Paper

e-patients.net


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


JAMIA, 1997


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


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

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

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?

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


“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



Any clinician whose sense of self-worth

depends on knowing everything

is in big trouble.

Lesson learned:


It’s no failure on the clinician’s part

if a patient’s seen something they haven’t.


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.

VA’s “Blue Button” (and DoD & Medicare)

2012: 1 million + Automatic!

“The great thing about a market: you don't need a central plan because i have a dollar in play - i'll work it out.


OpenNotes

What happens when patients see

their doctors’ notes?


Announced this past Monday




•  99% of patients wanted to continue"

•  17-26% of docs preferred not to continue…"–  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 “It’s time to redesign medical data”


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”?





Same data – better software


The information’s clearer


The family’s enabled and empowered.


Health on the Internet: Separating the Gold from the Garbage


Nov. 2007:

This googling patient was a nightmare

(Title should have been “When the patient is a

yahoo”!)


o Feb. 2010:

Sites like ACOR & PatientsLikeMe:

patients are creating value by

connecting


Jan. 2011: Googling patient

helps doc find correct diagnosis

more quickly


e-Patient families need

information coaches.

That would be you.


http://b i t .ly/gold from garbage


“All knowledge is in constant beta”

Gilles Frydman, ACOR founder ICSI / IHI Colloquium, May 2010


Autopsy shows ...

10-15% of diagnoses were wrong (So how could the treatments be right??)


Autopsy shows ...

10-15% of diagnoses were wrong (So how could the treatments be right??)

He wrote his epilogue to patients:

Questions for partnering with your providers on “What else could this be, doc?”



“Retraction Watch” blog



Informed Medical Decision Making


“Ultimately, it turned out to be the trade-off between peeing better and sex.”


“And when it was stated in those terms, SDM flowed into the conversation.”


Adoption of new practices years after discovery

From 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


What is the standard of care

for condition x??


Great way medlibs can enable families:

populate StandardsOfCare.org


Charlene Li (“Groundswell”) “Social networks

will be like air”

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


“Data Liberación”

Todd Park Innovator Entrepreneur HHS Chief Tech Officer US Chief Tech Officer


Patients Like Me


Obstacle: “I hate to bother you...”


BOTHER US!


Let’s get bothered! bit.ly / botheramedlib

To get bothered: bit.ly / bother-signup


You know it’s a movement

when the artists and musicians show up


Regina Holliday’s Medical Mural Advocacy Project

The Walking Gallery ReginaHolliday.blogspot.com


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


Blog to print New media gave me “freedom of the press”

Traditional media gave me credibility and impact

And a conference...



Why?? ...


Amazingly, concerned and activated families

do look for health information!


It’s the e-Patient


MOVIE

bit.ly / DataSong


Best Care at Lower Cost Institute of Medicine – Sept 2012


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

September 2009

May 2009


“e-Patient Dave” deBronkart Twitter: @ePatientDave

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

[email protected]

You Are Vital to the Future of Healthcare


May You Get Bothered a Lot.

bit.ly / botheramedlib

Health & Medicine

e-Patient Dave Midwest MLA 10-20-12