Are you ready to partner with empowered, engaged e-patients?

“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]

Patients as Partners: the Power of Patient Engagement


Are you ready to partnerwith empowered, engaged

“e-patients”?


Achieving population healthis sure to bring you more of us.

How I came to be here

• High tech marketing• Data geek; tech trends; automation

• 2007: Cancer discovery & recovery• 2008: E-Patient blogger• 2009: Public Speaker

• 2010: full time

• 2011: international

“Patient” is nota third person word.

Fundamental Principle #1:

Your time will come.

The right of a desperate person to try to save themselves

(or their family)


Everyone can perform betterwhen they’re informed better.


It’s an errorto keep people uninformed

Corollary:

then think “they know nothing”

Compliance(Whose goal is it, anyway?)

e-Patients.net founderTom Ferguson MD1944-2006

EquippedEngagedEmpoweredEnabled”

Doc Tom said,“e-Patients are

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 e-Patient12 items in my pre-appointment “agenda” email

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

“Yourshoulderwillbefine…butthere'ssomethinginyourlung”

Multiple tumors in both lungs

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

“My doctor prescribed ACOR”(Community of my patient peers)

My patient peers 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

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.

Surgery & Interleukin worked

How can it be

that the most usefuland relevant and

up-to-the-minute information can exist outside of

traditional channels?

Donald Lindberg MDDirector of the National Library of Medicine

“If I read two journal articles every night, at the end of a year I’d be 400 years behind.” (2004)

2013: • 2,200 articles are published every day• Doctors must know 10,000 conditions• Patients can focus only on their own.

Because of the Web, Patients Can Connect to Information and Each Other

Who steered meto this community?

My trusted authority.

“We are the most credible source”Nancy Schlichting

People can perform betterwhen they’re

informed better.

So, what IS thisempowerment thing,

really??

Disempowered: (aka powerless)

“There’s nothin’ I can do about this …”

Empowerment“Increasing the capacity of individuals or groups


to make choices [about what they want]


to make choices [about what they want]

and to transform those choices into desired actions & outcomes”

World Bank, 2002

What do we mean byEngaged?

Participating?

Sherry Arnstein, 1969

Arnstein’s Ladder of Citizen Participation

Citizen Participation

http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt





As gorgeously designed

As gorgeously designed

What they would have asked for





Dutch IVF programhad an insane idea

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

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

Dutch IVF programhad an insane idea

• Give patient couples a wiki, and six months to talk amongst themselves. 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 roomsfor families who’ve conceived

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.”

When does autonomy become appropriate?

Let’s meet two real e-patients:

Hugo Campos andDana Lewis

Hugo Campos wants his ICD data

Patient Experience: periodic printouts

Kardia (née “AliveCor”): Smartphone ECG

Hugo Campos@hugooc

[email protected]

My first year with the AliveCor

February 8, 2013

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

“Quantified Self” #OpenAPS

Public Health conferenceSan Diego, May 18 (n=1)*59 (n=1)*59

August 13: *103

#OpenAPS users are tweeting

When assets digitize, what’s possible changes fast.

Fundamental Principle:

Knowledgeis

power

Knowledgeis

power

Knowledgeenablespower

If you live long enoughthe future changes.

My college classmate Jay

The futurewhen Jay and I were born

Today:Medicine and population health

are preventing most deaths

34 years from now:a truly unprecedented

population profile

Half of everyone who’s ever been 65 is alive today

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

76

What an opportunity!

Are you ready?

Geriatrics:“The art and scienceof modifying medicineso that it works better

for older peopleand for their families”

A very personalhealth behaviors story

Warning: this is a

NO GUILT ZONE!!

I’ve tried it. Guilt is

USELESS!

November 2014

I know: Gadgets!!

Withings Wi-Fi scaleFitness wristband & heart band

I know: Gadgets!!

Withings Wi-Fi scaleFitness wristband & heart bandYMCA Diabetes Prevention Program(food training & physical activity)MyFitnessPal diet tracking appStrong support from my spouse

p.s.: My providers can’t see this in their computers!

OMG, I’m a runner now

At dx: Nov 2014, 231#:

Sept 2015, 203#:

August 5, 2016:• Labcorp: 5.7 (still pre)• Quest: 5.5 (not pre??)

The questionable fruits of compliance

5.9 (??!?)

5.8

THIS is what happensin chaotic complexity

OpenNotes

What happens when patients see

their doctors’ notes?

OpenNotes

• 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

October 2007December 2006

May 2009

2.8 e-Patient Years in Pictures


Are you ready to partnerwith empowered, engaged

“e-patients”?


Population healthis sure to bring you more of us.

Are you ready to partner with empowered, engaged e-patients?

Health & Medicine