“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

How e-Patients are changing healthcare

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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

Important principle: “Patient” is not

a third person word.

Your time will come.

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

Pt of future

Me? An indicator of the future??

•  Who’s getting online: –  1989: Me (CompuServe sysop) –  2009: 76% of US adults online

•  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

“Yourshoulderwillbefine…butthere’ssomethinginyourlung”

Multiple Tumors in Both Lungs Where’s This From??

Primary Tumor: Kidney

Classic Stage IV, Grade 4

Renal Cell Carcinoma

Illustration on the drug company’s

web site

Median Survival: 24 weeks

�My doctor prescribed ACOR� (Now: SmartPatients.com)

ACOR patients told me: •  Welcome to the club.

We know how you feel.

ACOR patients told me: •  This is an uncommon disease –

get to a hospital that does a lot of cases

•  There is 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

How can it be

that the most useful and relevant and

up-to-the-minute information

can exist outside of traditional channels?

“E-Patient White Paper”

“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. Even when lives are at stake.

Dr. Lindberg: 400 years

2013: 1100 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.

“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.

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

Institute of Medicine – Sept 2012 382 page report: “Best Care at Lower Cost”

Institute of Medicine – Sept 2012 382 page report: “Best Care at Lower Cost”

The IOM 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.

Important question: Where does

useful information come from?

Remember: People perform better

when we’re informed better.

Hugo Campos wants his ICD data

Kardia (née “AliveCor”): Smartphone ECG

Hugo Campos @hugooc

HugoOC@gmail.com

My first year with the AliveCor

February 8, 2013

#OpenAPS & @DanaMLewis (Open Source Artificial Pancreas System)

“Quantified Self” #OpenAPS Public Health conference San Diego, May 18 (n=1)*59

(n=1)*59

June 3, White House: *75

“Your time will come” Mine did.

A1C increased risk

Withings Withings Wi-Fi scale

Fitness wristband & heart band

YMCA Diabetes Prevention Class (food training & physical activity)

MyFitnessPal diet tracking app

Strong support from my spouse

My doctors can’t see this in their computers!

How can we empower patients and families

to improve their health and their care?

Empowerment “Increasing the capacity �of individuals or groups

to make choices [about what they want]

and to transform those choices �into desired actions & outcomes”

World Bank, 2002

ì

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

OpenNotes

What happens when patients see

their doctors’ notes?

•  99% of patients wanted to continue

•  17-26% of doctors 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

Get Involved in Your Data.

Quality Matters.

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.”

Empowered families can help – if they have the information

Do you know what’s in your

family’s records?

eHealth Law (2017) e-health-suisse.ch For patients: •  Free, voluntary EHR •  You define doctors’

access rights •  See all data on portal For HCPs: •  Hospitals: 2020 •  Retirement homes 2022 •  Cloud •  Intercantonal data

sharing

Obstacle to adoption: “But patients

don’t want this.”

Until people realize they have the power

to ask,

they don’t ask

We are at the start of a new

cultural awakening.

Enabled by putting information in the hands of people who can use it

You know it’s a revolution

when the artists and musicians show up.

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”

The Walking Gallery ReginaHolliday.blogspot.com

“Gimme My DaM Data” dave.pt/datasong

•  The French edition wants a publisher – contact @tinaburger in Lausanne

Impliquons les Patients! •  The French

print edition wants a publisher! Contact @tinaburger in Lausanne

October 2007 December 2006 May 2009

2.8 e-Patient Years in Pictures

“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave dave@epatientdave.com

Let Patients Help improve healthcare

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