e-Patient Dave IKF March 23 2013

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

JAMIA, 1997

“e-Patient Dave” deBronkart Twitter: @ePatientDave

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

[email protected] Skype: ePatientDave

e-Patients Can Help Improve 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 © e-Patient Dave Re-use is permitted with this notice

“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



Foundation Principles •  Patient is not a third person word

–  Your time will come –  It’s a collective noun.

•  Patients are the ultimate stakeholder –  Yet they’re often omitted from planning the future

•  A pivotal force: The urge to care for our children and elders


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

Equipped Engaged Empowered Enabled”

Doc Tom said, “e-Patients are


JAMIA, 1997



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


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


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

Baseline: 39x43 mm 50 weeks: 20x12 mm


Nice curve!

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.”



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)



Seven Preliminary Conclusions (in Chapter 2)

1.  e-Patients have become valuable healthcare resources and providers should recognize them as such

2.  The art of empowering patients is trickier than we had thought

3.  We have underestimated patients’ ability to provide useful online resources

4.  We have overestimated the hazards of imperfect online health information

5.  Whenever possible, healthcare should take place on the patient’s turf.

6.  Clinicians can no longer go it alone

7.  The most effective way to improve healthcare is to make it more collaborative

“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-Patient White Paper

And finally: recognition

from the establishment



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. © e-Patient Dave

Re-use is permitted with this notice


JAMIA, 1997



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



Lesson learned: People perform better

when they’re informed better.

It’s perverse to keep people

in the dark

and call them ignorant

Corollary:



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

2012: 1 million + Automatic!

Informed Medical Decision Making



The Dartmouth Atlas of Practice Variation

Trans-urethral resection Radical prostatectomy Prostate treatment rates, by region

Remedy: Shared Decision

Making (SDM)


Informed Consent


Informed Choice


Problem: Patients may not

find value in all the technical details


(In other words, to them, the

discussion wasn’t patient centered)


“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.”



BREAK


October 2007

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


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



You know it’s a revolution

when…


How a kidney cancer wife found the info she needed •  No insurance;

no treatment. Then:

•  Three bad hospitals; no help. Then:

•  A friend said “I know a guy... on Twitter”




Regina Holliday’s Medical Mural Advocacy Project

The Walking Gallery ReginaHolliday.blogspot.com



Information makes a difference.





“Data Liberación”

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


Case Study #3: 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



Raw data


A patient to her doctor: (Rhode Island Quality Institute)

“You make me sign a consent form to SHARE my data. You ought to ask my consent to HOARD it.”

“My patients aren’t like that.”

“They aren’t asking for this.”

Objection:




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


Shrugs; “There’s nothin’

I can do…”

Disempowered:


Empowered:

Self-aware – you know what you want

Willing & able to act on it


Engaged:

Thinking; learning; acting; interacting


Disengaged:

Passive; receiving.

A car in a car wash.


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?”

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

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


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

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.

Information: clearer.

Consumer: informed, enabled.


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



Why not “Google Earth for my body”?


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

OsiriX



VeHU: Have you looked in your medical record?

Do you know if it has mistakes?


Dr. Eric Topol


iPhone EKG??

12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”



Who owns the data? My view (on CafePress.com)


A patient to Laura Adams: (Rhode Island Quality Institute)

“You make me sign a consent form to SHARE my data. You oughta ask my consent to HOARD it.”

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



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


House addressing his residents: “OK, so you’re out of ideas! So??”

“You think the stuff you learned four years ago is all there is??”

“You think nothing new has come up since then??”

“I know you’re busy. Have you asked the family if they can dig anything up?”



“Shift Index”

“We are shifting from a world where the key source of strategic advantage was in protecting and extracting value from a given set of knowledge stocks ...


“Shift Index”

“...into a world in which the focus of value creation is effective participation in knowledge flows.”

–Thomas Friedman Pulitzer prize winner (3x)

New York Times January 19, 2010


“The Power of Pull”

“Looking for things without a defined path and without knowing what they are”


Britannica vs. Wikipedia


Physician adoption of new practices years after discovery The “17 years” thing 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


Overheard:

“You’re crazy if you don’t. check Wikipedia, and you’re a fool

.if you stop there.”



Watson remembers everything it’s read

What if medical problem solving

where all the relevant facts were gathered and handed to you

so you could spend your energy thinking?

were suddenly an open book test

(including this week’s news)




“May Require Refrigeration” cushings365.posterous.com, 9 / 17 / 10

•  “Panic! For the first time, I got a note on my florinef that it might (MIGHT?) need to be refrigerated.

•  I didn't know that. Should I have been doing that all along?

•  No one told me.”

•  “I called the pharmacy.

•  They read what is on the printout which comes with the drug. I had already read that. It wasn't helpful.”


•  “So, I asked the ones who know. My "Cushie" friends who take it. Those who have had BLA’s.

•  “The verdict: –  No, that's a generic warning with

fludrocortisone (generic). –  Only at extreme temps should it be

refrigerated in the U.S. –  Some of the brands in the UK and other

countries need refrigerated.”

“May Require Refrigeration” cushings365.posterous.com, 9 / 17 / 10


Dr. Eric Topol



•  The practice of medicine is coming apart at the seams – “dis-integrating” – so the pieces can recombine in new ways



•  Connectedness and disappearing boundaries mean we can know things we could not know in the past.



•  In the past we had to guess at Rx based on demographics (similar populations). We’re starting to not need that.



The Beery Twins


The Beery Twins


The Beery Twins today


If the microscope’s happy

but the patient’s not,

has care been achieved?

Has optimal care??

Was the money well spent for customer value?



“Shift Index”

“...into a world in which the focus of value creation is effective participation in knowledge flows.”

–Thomas Friedman Pulitzer prize winner (3x)

New York Times January 19, 2010

Dutch IVF program had an insane idea

•  Give patient couples a wiki, and six months to talk amongst them-selves. The promise:

•  “We’ll give you anything you decide – your top ten choices. Unedited.”



Top things IVF patients asked for

•  I want insurers to reimburse six attempts.

•  I want insurance companies to only count it if a puncture or a replacement has taken place.

•  I want empathy from my doctor, not just technical or financial information.

•  I want separate waiting rooms for pregnant women and patients with a fertility treatment

•  I want more time to make an appointment, even in the evening.

Compliance (Whose goal is it, anyway?)

Achievement!



Peter Margolis, Cincinnati Children’s

.5 x .5 = .25




Are we barking up the wrong tree?

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


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


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.


“The oft-expressed fear that patients are using the internet to self-diagnose and self-medicate without reference to medical professionals does not emerge in national phone surveys or in this special rare-disease community survey.”

Physician as trusted authority


“There’s crap on the internet. We need to get out there and balance it”

Wendy Sue Swanson, MD Mother & pediatrician

@SeattleMamaDoc

Facebook too


•  “The more info we push out, the better decisions they make”

•  “We’ve taken a demographic group and through connected technology they’re engaged in their health”

•  “Our patients tell their friends – ‘and he’s on Facebook’”

An OB/Gyn on social media?? @MacObGyn


PatientsLikeMe lithium study


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

Dr. McDermott: “I have no doubt the interleukin

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”



JAMIA, 1997

“e-Patient Dave” deBronkart Twitter: @ePatientDave

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

[email protected] Skype: ePatientDave

e-Patients Can Help Improve Healthcare


Documents

e-Patient Dave IKF March 23 2013