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“e-Patient Dave” deBronkart
Twitter: @ePatientDave
Patients are the
ultimate stakeholder
and the ultimate “sensor”
Ad hoc ...
This is an ad hoc set of slides
assembled during an
interactive breakout session
“Engaging patients in HRO” at the
High Re...
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...
Society for Participatory Medicine
www.ParticipatoryMedicine.org
“Participatory Medicine
is a movement in which
networked ...
About HRO:
Wikipedia says
http://en.wikipedia.org/wiki/High_reliability_organization
“A High Reliability Organization (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...
Topic 1:
Who gets to say
what value is?
(In all other quality fields, quality is defined by the
ultimate consumer.
This is...
If the microscope’s happy
but the patient’s not,
has care been achieved?
Has optimal care??
Was the money well spent
for c...
Dutch IVF program
had an insane idea
•  Give patient couples
a wiki, and six months
to talk amongst them-
selves.The promi...
Top things IVF patients asked for
•  I want insurers to reimburse six attempts. 
•  I want insurance companies to only cou...
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 importa...
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...
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
“situation...
VA’sVeterans eHealth University, 2012 – audience response:
Have you looked in your medical record?
Do you know if it has m...
Pre-op:“At least you won’t be lopsided.”
“What do you mean?”
“You’re getting a bilateral mastectomy.”
“No I’m not!”
“That’...
“Now I know why docs
don’t give you scan data.
I see theVirgin Mary,
Jimmy Hoffa, several forks,
and Saddam’s yellowcake
h...
“So I figure out how to open
my bone scan data. I look.”
“What the...”
“What’s that ****-shaped
ghost-shadow thing—
it loo...
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
...
•  99% of patients wanted to continue	

•  17-26% of docs preferred not to…	

– But when given the chance to stop, none di...
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
High Reliability Organizing conference, March 2014 (ad hoc slides)
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High Reliability Organizing conference, March 2014 (ad hoc slides)

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High Reliability Organizing conference, March 2014 (ad hoc slides)

  1. 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. 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. 3. Preface: Background info on HRO and on my view of medicine for people who weren’t there
  4. 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. 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. 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. 7. This session was about how we might start involving patients in HRO ... starting with teaching them what it is.
  8. 8. These slides aren’t for a speech with a particular flow – they’re just a set of topics for that moment.
  9. 9. Foundation principle: There have been real changes in the establishment’s view of the value of the patient’s perspective
  10. 10. Institute of Medicine – Sept 2012 Major New Report:“Best Care at Lower Cost”
  11. 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. 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. 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. 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. 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. 16. Topic 1a: In the patient’s view, success is achievement
  17. 17. Compliance (Whose goal is it, anyway?) Achievement!
  18. 18. 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)
  19. 19. But the internet has caused real changes in pathways for arrival of reliable information
  20. 20. Web 2.0: “When the web began to harness the intelligence of its users.” – Tim O’Reilly
  21. 21. “Liquidity” transforms what’s possible because it alters the availability of a vital resource.
  22. 22. 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
  23. 23. Topic 3: In medicine, unreliable information flow causes real challenges in data quality and performance
  24. 24. In this area, activated / engaged patients and families can make a major contribution to HRO’s key principle of “situational awareness”
  25. 25. VA’sVeterans eHealth University, 2012 – audience response: Have you looked in your medical record? Do you know if it has mistakes?
  26. 26. 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.”
  27. 27. “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
  28. 28. “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
  29. 29. Topic 4: For patients to be partners in high reliability, they need access to the information
  30. 30. “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
  31. 31. Cultural obstacle to patient access to the medical record: “Patients will flood us with time-wasting questions.”
  32. 32. Evidence: The OpenNotes study MyOpenNotes.org Patients were allowed to log in and see their doctors’ unedited visit notes (published Fall of 2012)
  33. 33. •  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

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