calohii transformation summit

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

Health Care is Transforming through Participatory Medicine

If you live long enough,things change.

Flexner Report,

1910“On the whole,

far too little clinical material under proper control

is offered.”

(Specifically,patients)

“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 MDTestimony to the House Ways & Means subcommittee on health, 2004

My, how timeshave changed.

How I came to be here

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

How I came to be here

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

• 2008: E-Patient blogger

• 2009: ParticipatoryMedicine, Public Speaker

• 2010: full time

• 2011: international

Foundation Principle:

“Patient” is not a third person word

Ask:

What would you wantif your child were dying?

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 weddingsin the U.S. met online

– 2011: One in five couplesmet online

The Engaged Patient12 items in my pre-appointment “agenda” email

The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007

“Your  shoulderwill  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

Median Survival:24 weeks

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

Surgery & Interleukin worked.Target Lesion 1 – Left Upper Lobe

Baseline: 39x43 mm 50 weeks: 20x12 mm

Question:

How can it be

that the most usefuland 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)

“The emerging world of the e-patient cannot be fully

understood and appreciated in the context of

pre-internet medical constructs.”

2004

Thesis:People perform betterwhen they’reinformed better.

Corollary:It’s perverseto keep people in the darkthen call themclueless.

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

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

My classmate Jay

The demographic imperative

The demographic imperative

The demographic imperative

Next Lesson:Get Involved in Your Data.

Health InformationIntegrity 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.”

Foundation Principle:

“Patient” is not a third person word

Next lesson:When assets digitize,

things change fast.

Dr. Eric Topol

AliveCor: iPhone EKG12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order”Feb 2014: OTC

Hugo Campos@hugooc

HugoOC@gmail.com

My first year with the AliveCor

February 8, 2013

New I.P. decision on patient data access

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

Clarityis Power

W e d e m a n d a

MEDICALRECORDSPIGOT!It’s all about ME, so it’s MINE!Take action: bit.ly/healthspigot

But remember –information alone

doesn’t change behavior

Withings

WithingsWi-­Fi  scale

Fitness  wristband  &  heart  band

Withings

WithingsWi-­Fi  scale

Fitness  wristband  &  heart  band

YMCA  Diabetes  Prevention  Class(food  training  &  physical  activity)

MyFitnessPal diet  tracking  appStrong  spousal  support

My doctors can’t see this in their computers!

Wil l 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

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

Health Care is Transforming through Participatory Medicine

Closing panel:Where does this leave us?

• David Lindeman, AARP board member• e-Patient Dave

• Beth Abbott – California Patient Advocate• Liz Helms, President and CEO, California

Chronic Care Coalition• Discuss!

Four quick lessonsI wish I’d said

#1: Improving healthcarewill not happenby poking into

the money.

Something thereis stuck or broken.

ClearHealthCosts.com

#2: That clashing soundis the collision

of two discordantparadigms

1957

1962

“Kuhn thought not only that there are scientific revolutions but also that they have a structure.”

-- Ian Hacking’s introduction to the 50th anniversary edition, 2012

Stages a scientific field goes through• Normal science• Puzzle solving• Paradigm• Anomaly• Crisis• Revolution

“Kuhn’s insistence that a paradigm shift was a mélange of sociology, enthusiasm and scientific promise, but not a logically determinate procedure, caused an uproar”-- Wikipedia

Many frameworks

Many conceptions of patients’ nature

• Compliant?

• Autonomous?

• Collaborative?

Result:

• Inconsistent standards of practiceunwarranted by any evidenceregarding what’s appropriate to expect from patients

• Lack of policy supportfor patient and family engagement

“The emerging world of the e-patient cannot be fully

understood and appreciated in the context of

pre-internet medical constructs.”

2004

#3: Culture change is possible. Melissa was right:

parallels with feminism.

#4: Kyra was right.

The difficulty of “Easy level”

Mental Health issues: Integration in primary care

Specialties

Specialties