“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

Engaging Patients in Their Health and Their Care

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Disclosures

• Advisory consulting on Patient Perspective: TrialReach, TRON

How I came to be here

• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discover & recovery

• 2008: E-Patient blogger

• 2009: ParticipatoryMedicine, Public Speaker

• 2010: full time

• 2011: international

“It can be argued

that the largest yet most neglected health care resource, worldwide, is the patient…”

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e-Patients.net founderTom Ferguson MD 1944-2006

Equipped

Engaged

Empowered

Enabled

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

(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 Patient12 items in my pre-appointment

“agenda” email

The Incidental FindingRoutine 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 shockyou’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 bethat the most useful

and relevant andup-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.

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

“My patients aren’t asking

for this.”

Objection:

“My patients aren’t at all engaged.”

Problem:

Are you??

Peter Elias, MD (Maine)

“When my wife wants me to help pick carpet for remodeling the grown son’s bedroom and hall, I truly do not WANT to do anything and do not WANT to be involved, so I am always in the market for new and more convincing ways to say ‘Yes, dear.’”

Peter Elias, MD (Maine)

“I love what my auto mechanic does. ‘Hey doc. Your snow tires aren’t looking so good. Do you have a preference for brand or price, or do you want me to just give you a couple good options and my recommendation?’”

Peter Elias, MD (Maine)

“I have no problem with patients who want to come in and have me explain just enough so they can credibly tell their spouse what the doctor said. My job is to

help them reach their health goals,

Peter Elias, MD (Maine)

“I have no problem with patients who want to come in and have me explain just enough so they can credibly tell their spouse what the doctor said. My job is to

help them reach their health goals, and the ability to be minimally involved can be one of their health goals.

Prochaska’sTranstheoretical Model

Hibbard’s PAM(Patient Activation

Measure)

Models of Engagement,Activation and Change

• TTM (Prochaska)

• Patient Activation Measure (Hibbard)

• Motivational Interviewing (Miller & Rollnick)

• CDSMP (Lorig)

How engaged are YOU?

Patients have the most at stake

with the accuracy, completeness and

availabilityof the medical record

Wall Street Journal, June 10

It’s perverse to keep people in the

dark

then call them ignorant.

“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 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

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Dr. Eric Topol

AliveCor: iPhone EKG

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

Urgency:The

Demographic Crunch

Problem(?) Chronic Disease Epidemic

CDC (2004) Ten Great Public Health Achievements in the 20th Century & Leading Causes of DeathJones (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 DeathJones (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

todayPopulation today: ~7.0 billionEnd of World War II: ~2.3 billion

At last:recognition

from the establishment

Institute of Medicine – Sept 2012Major New Report: “Best Care at Lower Cost”

Yes, the IOM itselfsays 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.

June 11, 2014

Announced –

• Patient advisory panel

• Patient peer review of research papers

• Authors are to document how they involved patients in defining the question and outcome measures

www.bmj.com/content/348/bmj.g3726

Will iam Gibson

“The future is here – it’s just not evenly distributed yet”

October 2007

2.8 e-Patient Years in Pictures…

December 2006

May 2009

This month – first

birthday

“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/ePatientDavedave@epatientdave.com

Engaging Patients in Their Health and Their Care

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