let patients help note my improve health and care branding · np2012_d1.csv . the iom itself says...

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]

Let Patients Help Improve Health and Care

1

Note my branding

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

“It can be argued that the largest yet most neglected health care resource, worldwide, is the patient…”

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

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.

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#

White box

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#

White box

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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

0.2% 0.1% 0.3%

. . . . . . . . . . . . . . .

. .

US population 152.3 million 85+: 457k

Source 1: http://www.census.gov/population/projections/files/downloadables/NP2012_D1.csv

0.3% 0.2% 0.5%

. . . . . . . . . . . . . . .

. .

US population 180.7 million 85+: 904k


0.4% 0.2% 0.6%

. . . . . . . . . . . . . . . .

.

US population 205.0 million 85+: 1.23 million


0.7% 0.3% 1.0%

. . . . . . . . . . . . . . .

. .



0.9% 0.3% 1.2%

. . . . . . . . . . . . . . .

. .



1.0% 0.5% 1.5%

. . . . . . . . . . . . . . .

. .


Source 2: http://www.census.gov/popest/data/intercensal/national/tables/US-EST00INT-01.xls

1.1% 0.6% 1.7%

. . . . . . . . . . . . . . .

. .


Source 2: http://www.census.gov/popest/data/intercensal/national/tables/US-EST00INT-01.xls

1.3% 0.7% 2.0%

. . . . . . . . . . . . . . .

. .



1.5% 0.9% 2.4%

. . . . . . . . . . . . . . .

. .



2.3% 1.4% 3.7%

. . . . . . . . . . . . . . .

. .



2.7% 1.7% 4.4%

. . . . . . . . . . . . . . .

. .



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.

Data quality is essential.

Let Patients Help.

No clinician can possibly perform to the top of their training if the data

they’re given is wrong.

Wall Street Journal, June 10

People perform better when they’re

informed better.

It’s perverse to keep people

in the dark

and call them ignorant

Corollary:

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

questions.”

OpenNotes

Announced this past Monday

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•  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!

October 2007

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

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]

Let Patients Help Improve Health and Care

63

Note my branding

let patients help note my improve health and care branding · np2012_d1.csv . the iom itself says...

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