This document contains slides from a presentation by "e-Patient Dave" on engaging patients in high reliability organizations. The presentation discusses how patients can contribute to situational awareness, one of the key principles of HROs, by identifying errors or inconsistencies in their own medical records and test results. It also argues that for patients to truly be partners, they need access to the same medical information as clinicians. However, there are cultural obstacles to sharing information with patients, such as concerns that it will lead to time-wasting questions. Studies show that when patients are given access to doctors' notes, the vast majority want to continue having access and feel it would influence their choice of providers.

1. “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
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com

2. 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

3. Preface:
Background info on HRO and
on my view of medicine
for people who weren’t there

4. 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.

5. 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.”

6. 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.

7. This session was about
how we might start involving patients
in HRO ... starting with
teaching them what it is.

8. These slides aren’t for a speech
with a particular flow –
they’re just a set of topics
for that moment.

9. Foundation principle:
There have been real
changes in the
establishment’s view
of the value of
the patient’s perspective

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

11. 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.

12. 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.)

13. 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?

14. 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.”

15. 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.

16. Topic 1a:
In the patient’s view,
success is achievement

17. Compliance
(Whose goal is it, anyway?)
Achievement!

20. 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)

21. But the internet has caused
real changes
in pathways for arrival
of reliable information

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

23. “Liquidity”
transforms
what’s possible
because it
alters the availability
of a vital resource.

24. 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

26. Topic 3:
In medicine, unreliable
information flow
causes real challenges
in data quality
and performance

27. In this area,
activated / engaged
patients and families
can make a major
contribution to HRO’s
key principle of
“situational awareness”

28. VA’sVeterans eHealth University, 2012 – audience response:
Have you looked in your medical record?
Do you know if it has mistakes?

29. 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.”

30. “Now I know why docs
don’t give you scan data.
I see theVirgin 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

31. “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

34. Topic 4:
For patients to be partners
in high reliability,
they need access to
the information

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

36. Cultural obstacle to patient
access to the medical record:
“Patients will
flood us with
time-wasting
questions.”

37. Evidence:
The OpenNotes study
MyOpenNotes.org
Patients were allowed to log in
and see their doctors’ unedited
visit notes
(published Fall of 2012)

41. • 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

42. Topic 5:
But there are major shortfalls
in medicine’s adoption
of new methods
(far worse than other industries)

43. Physician adoption of new
practices years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, inYearbook 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
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May be distributed with this license included

44. Scurvy
264
years!
From
The Fourth Paradigm
by Microsoft Research

45. Topic 6:
Situational Awareness
is vital – and there have
been real changes in
who CAN get at
valuable SA data

46. Dr. EricTopol

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