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Dave deBronkart
Twitter: @ePatientDave
dave@epatientdave.com
From “Let Patients Help”
to “Get Out of My Way”:
Why some pat...
“Patient” is not
a third person word.
Fundamental Principle:
Your time will come.
2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
Your shoulder
will be fine …
but there's
something
in y...
Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company’s
web site
Median Survival:
24 weeks
My doctor prescribed ACOR
(Community of my patient peers)
Surgery & Interleukin worked
You know
it’s a revolution
when the artists and
musicians show up.
Regina militant fist
The Walking Gallery
ReginaHolliday.blogspot.com
I assert: our paradigm of patient is broken,
and it’s holding back progress
A question that reveals
a paradigm error:
“This stuff is hard! …
What could people contribute
who don’t
have that training...
Try us.
Our ability to create
solutions of our own
is primarily limited
by lack of data
@KatieMcCurdy
Illustrator / patient, 2012
Skeptical observer, 2012:
@DanaMLewis
#DIYPS
(“Do-it-yourself Pancreas System”
#DIYPS: Open Source pancreas!
(“Do-it-yourself Pancreas System”
#OpenAPS users are tweeting
#OpenAPS users are tweeting
Knowledge
(including data)
truly is power.
Empowerment
“Increasing the capacity
of individuals or groups
to make choices [about what they want]
and to transform thos...
It’s perverse
to keep someone uninformed
then say “They seem ignorant!”
A common objection:
“OK, Dave, you’re like that,
but the patients I know
aren’t asking for this.”
This has strong parallels
with what men used to think
about women.
That’s clearly a
mental error.
April 1967 (fifty years ago):
“K. Switzer” runs the Boston Marathon
“Get the hell
out of my race!”
Remove constraints & what’s possible changes
1967 1972 19992017
1967 1972 1999
Paradigm errors è wrong expectations
2017
Don’t make
that mistake.
We demand a
MEDICAL
RECORD
SPIGOT!
It’s all about ME, so it’s MINE!
Take action: bit.ly/healthspigot
Give us
ALL our data
...
In other words…
Get out of our way.
J
Some “innovator”
patients are
already doing it
the hard way.
Kate Sheridan – nasty Lyme case
•30 doctors
•15 diagnoses
•From
star student
to unable
to read
a single page
• “Printouts over a foot high ...
typed it into Excel.
• “We took her lab data, her medication treatment timelines…
But th...
Kate’s view
• “I can’t tell you how powerful it is
to be able to hold that journey in
my hands.
• “There are many patients...
Michael Morris - Stage IV
colorectal (liver, lungs)
Michael Morris - Stage IV
@CureSoft with FHIR
“I’m using my data across multiple
hospitals to put together an
integrated s...
Enable achievement
by the person in trouble.
Enable a patient-side
app ecosystem
that can blossom in
directions of its own.
You can’t handle nicholson
You can’t
HANDLE
the
Helvetica!
Enable a patient-side
app ecosystem
that can blossom in
directions of its own.
Dave deBronkart
Twitter: @ePatientDave
dave@epatientdave.com
From “Let Patients Help”
to “Get Out of My Way”:
Why some pat...
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"
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data NOW" Slide 30 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 31 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 32 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 33 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 34 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 35 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 36 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 37 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 38 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 39 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 40 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 41 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 42 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 43 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 44 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 45 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 46 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 47 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 48 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 49 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 50 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 51 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 52 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 53 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 54 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 55 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 56 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 57 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 58 From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW" Slide 59 From “Let Patients Help” to “Get Out of My Way”: 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High speed talk to developers at the annual FHIR* Developer Days conference in Amsterdam. The world of health data migration is advancing very rapidly, and the time has come to call for developers to let PATIENTS have full access to every kind of data they need.
* FHIR = Fast Healthcare Interoperability Resources FHIR.HL7.org

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From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW"

  1. 1. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW.
  2. 2. “Patient” is not a third person word. Fundamental Principle: Your time will come.
  3. 3. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 Your shoulder will be fine … but there's something in your lung
  4. 4. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  5. 5. My doctor prescribed ACOR (Community of my patient peers)
  6. 6. Surgery & Interleukin worked
  7. 7. You know it’s a revolution when the artists and musicians show up.
  8. 8. Regina militant fist
  9. 9. The Walking Gallery ReginaHolliday.blogspot.com
  10. 10. I assert: our paradigm of patient is broken, and it’s holding back progress
  11. 11. A question that reveals a paradigm error: “This stuff is hard! … What could people contribute who don’t have that training??”
  12. 12. Try us.
  13. 13. Our ability to create solutions of our own is primarily limited by lack of data
  14. 14. @KatieMcCurdy Illustrator / patient, 2012
  15. 15. Skeptical observer, 2012:
  16. 16. @DanaMLewis
  17. 17. #DIYPS (“Do-it-yourself Pancreas System”
  18. 18. #DIYPS: Open Source pancreas! (“Do-it-yourself Pancreas System”
  19. 19. #OpenAPS users are tweeting
  20. 20. #OpenAPS users are tweeting
  21. 21. Knowledge (including data) truly is power.
  22. 22. 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
  23. 23. It’s perverse to keep someone uninformed then say “They seem ignorant!”
  24. 24. A common objection: “OK, Dave, you’re like that, but the patients I know aren’t asking for this.”
  25. 25. This has strong parallels with what men used to think about women.
  26. 26. That’s clearly a mental error.
  27. 27. April 1967 (fifty years ago): “K. Switzer” runs the Boston Marathon “Get the hell out of my race!”
  28. 28. Remove constraints & what’s possible changes 1967 1972 19992017
  29. 29. 1967 1972 1999 Paradigm errors è wrong expectations 2017
  30. 30. Don’t make that mistake.
  31. 31. We demand a MEDICAL RECORD SPIGOT! It’s all about ME, so it’s MINE! Take action: bit.ly/healthspigot Give us ALL our data and WE’LL decide what to do with it.
  32. 32. In other words…
  33. 33. Get out of our way.
  34. 34. J
  35. 35. Some “innovator” patients are already doing it the hard way.
  36. 36. Kate Sheridan – nasty Lyme case •30 doctors •15 diagnoses •From star student to unable to read a single page
  37. 37. • “Printouts over a foot high ... typed it into Excel. • “We took her lab data, her medication treatment timelines… But there was more to it. She had 26 symptoms. • “We started tracking their severity. Our spreadsheet had not just clinical data but her patient data. • “We also added for each of those trials how she’d responded.”
  38. 38. Kate’s view • “I can’t tell you how powerful it is to be able to hold that journey in my hands. • “There are many patients out there who have far crazier stories …but who do not have the tools to share them. I am asking you to help us change that.”
  39. 39. Michael Morris - Stage IV colorectal (liver, lungs)
  40. 40. Michael Morris - Stage IV @CureSoft with FHIR “I’m using my data across multiple hospitals to put together an integrated solution to manage my care with my care team.”
  41. 41. Enable achievement by the person in trouble.
  42. 42. Enable a patient-side app ecosystem that can blossom in directions of its own.
  43. 43. You can’t handle nicholson You can’t HANDLE the Helvetica!
  44. 44. Enable a patient-side app ecosystem that can blossom in directions of its own.
  45. 45. Dave deBronkart Twitter: @ePatientDave dave@epatientdave.com From “Let Patients Help” to “Get Out of My Way”: Why some patients want ALL their data NOW.

High speed talk to developers at the annual FHIR* Developer Days conference in Amsterdam. The world of health data migration is advancing very rapidly, and the time has come to call for developers to let PATIENTS have full access to every kind of data they need. * FHIR = Fast Healthcare Interoperability Resources FHIR.HL7.org

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