National Board of Medical Examiners 100th Annual Meeting (plenary), 2014

JAMIA, 1997

“e-Patient Dave” deBronkart Twitter: @ePatientDave

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

[email protected] Skype: ePatientDave

Let Patients Help Heal Healthcare

JAMIA, 1997




Let Patients Help Define What Care Is

“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

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

Animations removed

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

Animations removed

I do slogans.

I do slogans.

I do slogans.

I do slogans.

I do slogans.

JAMIA, 1997

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

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

Equipped Engaged Empowered Enabled”

Doc Tom said, “e-Patients are

JAMIA, 1997

on.TED.com/Dave

on.TED.com/Dave

JAMIA, 1997

USMLE: 1989

I owe my well-being to these USMLE victims:

Dr. David McDermott, Oncologist 1991-2



Dr. Andrew Wagner, Urologist/surgeon 1998, 1999, 2001



Dr. Andrew Wagner, Urologist/surgeon 1998, 1999, 2001

Dr. Megan Anderson, Orthopedic surgeon 1996

There’s a thread

you follow

Me? An indicator of the future??

•  Who’s getting online: –  1989: Me (CompuServe sysop) –  2009: 83% of US adults (Pew)

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

2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007

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

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company's

web site

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company's

web site

Median Survival: 24 weeks

E-Patient Activity 2: �My doctor prescribed ACOR�

(Community of my patient peers)

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

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.

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

There’s a thread

you follow

Protecting the public

•  Patients used the PHR a mean of 42.1 times during the 1-year intervention period.


•  In the PHR group, the total proportion of eligible preventive services received …


•  In the PHR group, the total proportion of eligible preventive services received ... –  increased from 24% at baseline to 40%

at the 12-month follow-up, whereas


•  In the PHR group, the total proportion of eligible preventive services received ... –  increased from 24% at baseline to 40%

at the 12-month follow-up, whereas –  it declined in usual care group, from 25% to 18%.

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

Liquidity transforms

what’s possible because it

alters the availability of a vital resource.

Not Liquid •  Moving it takes effort

•  Slow and predictable

•  Unexplained arrivals are suspicious

Not Liquid Liquid •  Moving it takes effort

•  Slow and predictable

•  Unexplained arrivals are suspicious

•  Frictionless – controlling the flow takes effort

•  Fast and unpredictable

•  “Tracks” everywhere, free

In the patient-centered world, who gets to say what value is?

(In all other quality fields, quality is defined by the ultimate consumer.

This is typically not done in healthcare, which I think is a mistake.)

If the microscope’s happy

but the patient’s not,

has care been achieved?




Has optimal care??




Has optimal care??

Was the money well spent for customer value?

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.”

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 as an attempt if the embryo gets started.




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




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

•  I want separate waiting rooms for families who’ve conceived

Note also: in the patient’s view,

success is achievement (not obedience)

Compliance (Whose goal is it, anyway?)

Achievement!

Speaking of the patient’s view…

©

•  0: Haha! I'm not wearing any pants!

©


•  2: Awesome! Someone just offered me a free hot dog!

©



•  4: Huh. I never knew that about giraffes.

©




•  6: I'm sorry about your cat, but can we talk about some-thing else now? I'm bored.

©





•  8: The ice cream I bought barely has any cookie dough chunks. I am disappointed.

©





•  8: The ice cream I bought barely has any cookie dough chunks. I am disappointed.

•  10: You hurt my feelings and now I'm crying!

©

©


Can we measure…

Dissemination of new knowledge?

Patients assume !their clinicians know and use !the best available methods. "

Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000

Creative Commons Attribution / Share-Alike May be distributed with this license included

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

From The Fourth Paradigm by Microsoft Research

Scurvy"

264 !years!"


Scurvy"

264 !years!"


Shortfalls: Robyn Tamblyn’s data

Can we measure…

Accurate, careful management

of health IT?

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.”

Can we measure…

Good communication skills with the

computer involved?

People perform better when they’re

informed better.

It’s perverse to keep people

in the dark

and call them ignorant

Corollary:

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

Can we measure… Ability to help patients take advantage of available data?

OpenNotes

•  99% of patients wanted to continue"


•  17-26% of docs preferred not to…"– But when given the chance to stop, none did"


•  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"

“My patients aren’t like that.”

“They aren’t asking for this.”

Can we be sure we don’t underestimate?

Congrats: Fewer neckties,

more X

Next step: Add

anasouptics!

There’s a thread

you follow


Paternalistic caring

“No, honey – you don’t know what you need.”

“I’ll take care of you.”

Sensible – up to a point

“I’ll decide for you.”

Nothing you do can stop time’s

unfolding.

You don’t ever let go of the thread.

Please

JAMIA, 1997




Let Patients Help Heal Healthcare

JAMIA, 1997




Let Patients Help Define What Care Is

Health & Medicine

National Board of Medical Examiners 100th Annual Meeting (plenary), 2014