Enable the Rise of the Participatory Patient

“e-Patient Dave” deBronkartTwitter: @ePatientDave

facebook.com/ePatientDaveLinkedIn.com/in/[email protected]

The Rise of the Participatory Patient

This activity is jointly-provided by SynAptiv and the Colorado Hospital Association

Conflict of Interest Disclosure Statement

I have no financial interest or other relationships with the industry relative to the topics being discussed.

Thank you.

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.

Everyone can perform betterwhen they’re informed better.

Fundamental Principle #2:

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

Googling is a signof patient

engagement!

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.

“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

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.

So, what IS thisempowerment thing,

really??

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?

Citizen Participation

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

As gorgeously designed

with best intent

What they would have asked for

Citizen Participation

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

Which levelare you at?

Could youmove that needle?

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 PartnershipsEngaged, 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.

“Patient perspectives”:The patient’s way of viewing the issuesPatient-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.

Here’s what it looks likewhen ENGAGEMENTand EMPOWERMENT

are fully expressed

• Who gets to saywhich outcomes matter?

• Is it reasonable to expect clinicians to know things they weren’t trained on?

• How do we solve that?

“My patientsaren’t like that.Nobody’s asking

for this.”

You might ask:Why aren’t they??

Can it change?

Civil Rights Movement

“But culture changeis HAAARRRRD.”

Pitfall: Don’t assume

newbie naivete means there’s no potential.

The solution is notto restrict & constrain.

Empower the people!Enable, and train!

SEEthe arriving future.

SEEwhat’s newly possible,

and why.

Health literacy

Health clarity

Clarity is power.

#HealthLiteracyMonth

Dialysis: The flip side of “literacy”

“Conclusion/Implications: • “In spite of recommendations for shared decision-

making, many older patients treated with dialysis do not perceive initiating dialysis as a choice.

• “Initiating dialysis may contradict patients’ EOL preferences, and many desire greater information and more discussions with clinicians.”

Blog w videos: dave.pt/ginnyknee

Example of new best practice – found on the internet

The literature:“This method shows no difference

in long term functionality”

Who gets to say whether THAT’s what’s important??

• What about MONTHS of suffering?• What about months of cost?• Who gets to say WHAT MATTERS?

Medium.com

Who peer reviewsthings like this??

Obviously not the users!

We are witnessing the evolution of

scientific certaintyand thus authority

Let’s meet two real, participatory e-patients:

Hugo Campos andDana Lewis

Hugo Campos wants his ICD data

Patient Experience: periodic printouts

Kardia (née “AliveCor”): Smartphone ECG

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

“Quantified Self” #OpenAPS

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

October 18: *126

#OpenAPS users are tweeting

1871: Oliver Wendell Holmes

“Your patient has no more right to all the truth you know than he has to all the medicine in your saddle-bags. He should get only just so much as is good for him.”

Bellevue graduation speech

Whole Earth Catalog “Millennium Edition”1994

“Health Online”– in 1996!

YOU can do better

because you cometo events like this

and learn FROM the past

and ABOUT the future

Participatory Takeawaysfor the Arriving Future: 1/3

• We now understand what “empowerment” and “engagement” mean. They make sense now.

• This gives us a firm place to push fromin designing sensible interventions and policies

• The primary limiting factor is culture change


• Information can be empowering and enabling– It can … but nothing’s automatic.

• Information pathways exist today that didn’t

• Information sources exist today that didn’t

• Each of these makes new things possible.


• This is not a rabble-based revolution. Medical and academic authority has been declaring it for years

• Nobody can make the most of medicine’s potential without knowing this and figuring it out

• Market leaders will be the ones who are known for saving additional lives in this way.

OpenNotes

What happens when patients see their providers’

actual 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

Elaine seinfeld clip captureOCTOBER17,1996(Exactly20yearsago!)

Updated J:http://dave.pt/OpenNotesSeinfeld

“e-Patient Dave” deBronkartTwitter: @ePatientDave

facebook.com/ePatientDaveLinkedIn.com/in/[email protected]

Enable the Rise of the Participatory Patient

Enable the Rise of the Participatory Patient

Health & Medicine

Transcript of Enable the Rise of the Participatory Patient