“e-Patient Dave” deBronkart Twitter: @ePatientDave

Patients are the ultimate stakeholder

and the ultimate “sensor”

Ad hoc presentation at High Reliability Organizing conference

breakout session on engaging patients in HRO

March 30, 2014

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dave@epatientdave.com

This is an ad hoc set of slides assembled during an

interactive breakout session “Engaging patients in HRO” at the

High Reliability Organizing conference

Fort Worth, TX March 30, 2014

Preface: Background info on HRO and

on my view of medicine for people who weren’t there

My primary physician Dr. Danny Sands and I are among this society’s 12 founders. Note how he arranges that we can both see the computer.

Society for Participatory Medicine www.ParticipatoryMedicine.org

“Participatory Medicine is a movement in which

networked patients shift from being

mere passengers to

responsible drivers of their health, and in which

providers encourage and value them as

full partners.”

About HRO: Wikipedia says

http://en.wikipedia.org/wiki/High_reliability_organization

“A High Reliability Organization (HRO) is an organization that has succeeded in avoiding catastrophes

in an environment where normal accidents can be expected due to risk factors and complexity.”

Avoiding catastrophes in healthcare is obviously valuable to patients but few healthcare organizations

and virtually no patients know about HRO.

This session was about how we might start involving patients

in HRO ... starting with teaching them what it is.

These slides aren’t for a speech with a particular flow –

they’re just a set of topics for that moment.

Foundation principle: There have been real

changes in the establishment’s view

of the value of the patient’s perspective

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

Yes, the IOM itself 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.

Topic 1: Who gets to say

what value is? (In all other quality fields, quality is defined by the

ultimate consumer. This is typically not done in healthcare,

which I think is a mistake.)

If the microscope’s happy

but the patient’s not,

has care been achieved?

Has optimal care??

Was the money well spent for customer value?

Dutch IVF program had an insane idea

•  Give patient couples a wiki, and six months to talk amongst them-selves. 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 separate waiting rooms for families who’ve conceived

•  I want more time to make an appointment, even in the evening. 

Topic 1a: In the patient’s view,

success is achievement

Compliance (Whose goal is it, anyway?)

Achievement!

Topic 2: A key cultural block to

medicine accepting patient voices is the belief that patients can’t know

anything important. (Because medicine really is hard)

But the internet has caused real changes

in pathways for arrival of reliable information

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

“Liquidity” transforms

what’s possible because it

alters the availability of a vital resource.

Not Liquid Liquid •  Moving it takes effort

•  Slow and predictable

•  Unexplained arrivals are suspicious

•  Frictionless – controlling the flow takes effort

•  Fast and unpredictable

•  “Tracks” everywhere, free

Topic 3: In medicine, unreliable

information flow causes real challenges

in data quality and performance

In this area, activated / engaged

patients and families can make a major

contribution to HRO’s key principle of

“situational awareness”

VA’s Veterans eHealth University, 2012 – audience response: Have you looked in your medical record?

Do you know if it has mistakes?

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.”

“Now I know why docs don’t give you scan data. I see the Virgin Mary, Jimmy Hoffa, several forks, and Saddam’s yellowcake hiding in my guts.”

“And this CT scan makes my butt look big.”

@Xeni Live tweeting, 12-18-2011

“So I figure out how to open my bone scan data. I look.”

“What the...” “What’s that ****-shaped ghost-shadow thing— it looks like I have a penis!”

“I call a hacker pal. ‘That, Xeni, is a ****.’” “I look at metadata more carefully. THEY GAVE ME THE WRONG DATA. SOME OTHER DUDE’S SCANS.”

@Xeni Next day: 12-19-2011

Topic 4: For patients to be partners

in high reliability, they need access to

the information

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

Cultural obstacle to patient access to the medical record:

“Patients will flood us with time-wasting questions.”

Evidence: The OpenNotes study

MyOpenNotes.org

Patients were allowed to log in and see their doctors’ unedited

visit notes (published Fall of 2012)

OpenNotes

•  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

Topic 5: But there are major shortfalls

in medicine’s adoption of new methods

(far worse than other industries)

Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000

Flu vaccine, year 32: 55% doing it, 45% still not

Beta blockers, year 18: 62% doing it, 38% still not

Diabetic foot care, year 7: 20% doing it, 80% still not

Cholesterol, year 16: 65% doing it, 35% still not

Creative Commons Attribution / Share-Alike May be distributed with this license included

Scurvy

264 ���years!

From The Fourth Paradigm by Microsoft Research

Topic 6: Situational Awareness is vital – and there have

been real changes in who CAN get at valuable SA data

Dr. Eric Topol

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