Successfully reported this slideshow.
We use your LinkedIn profile and activity data to personalize ads and to show you more relevant ads. You can change your ad preferences anytime.
JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDav...
JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDav...
“I want to note especially
the importance of the resource
that is most often under-
utilized in our information
systems – ...
How I came to be here
•  High tech marketing
•  Data geek; tech trends; automation
•  2007: Cancer discovery & recovery
How I came to be here
•  High tech marketing
•  Data geek; tech trends; automation
•  2007: Cancer discovery & recovery
• ...
I do slogans.
I do slogans.
I do slogans.
I do slogans.
I do slogans.
JAMIA, 1997
e-Patients.net founder
Tom Ferguson MD
1944-2006
e-Patients.net founder
Tom Ferguson MD
1944-2006
Equipped
Engaged
Empowered
Enabled”
Doc Tom said,
“e-Patients are
JAMIA, 1997
on.TED.com/Dave
on.TED.com/Dave
JAMIA, 1997
USMLE:
1989
I owe my well-being to
these USMLE victims:
Dr. David McDermott,
Oncologist 1991-2
I owe my well-being to
these USMLE victims:
Dr. David McDermott,
Oncologist 1991-2
Dr. Andrew Wagner,
Urologist/surgeon
19...
I owe my well-being to
these USMLE victims:
Dr. David McDermott,
Oncologist 1991-2
Dr. Andrew Wagner,
Urologist/surgeon
19...
There’s a
thread
you follow
Me? An indicator
of the future??
•  Who’s getting online:
–  1989: Me (CompuServe sysop)
–  2009: 83% of US adults (Pew)
Me? An indicator
of the future??
•  Who’s getting online:
–  1989: Me (CompuServe sysop)
–  2009: 83% of US adults (Pew)
•...
2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
Your%shoulder%
%%will%be%fine%…%
%%but%there's%%
%%somet...
Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company's
web site
Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company's
web site
Median Survival:
24 weeks
E-Patient Activity 2:
My doctor prescribed ACOR
(Community of my patient peers)
Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
Question:
How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
If I read two journal articles every night,
at the end of a year I’d be 400 years behind.
It’s not humanly possible to kee...
The lethal lag time:
2-5 years
During this time,
people who might have benefitted can die.
Patients have all the time in t...
Compare with
To Err is Human (98,000 deaths/yr Nov 1999)
Death by Googling:
Not.
(Dr. Gunther Eysenbach, Europe: 0 deaths ...
It may be
more dangerous
not to google
your condition.
These conclusions
are no more anti-doctor
or anti-medicine
than Copernicus and Galileo
were anti-astronomer.
Patients can ...
Problem(?)
Chronic Disease Epidemic
CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#o...
Problem(?)
Chronic Disease Epidemic
CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#o...
My classmate Jay
Half of everyone who’s
ever been 65 is alive today
Population today: ~7.0 billion
End of World War II: ~2.3 billion
There’s a
thread
you follow
Protecting
the public
•  Patients used the PHR a mean of 42.1 times
during the 1-year intervention period. 
•  Patients used the PHR a mean of 42.1 times
during the 1-year intervention period. 
•  In the PHR group, the total propo...
•  Patients used the PHR a mean of 42.1 times
during the 1-year intervention period. 
•  In the PHR group, the total propo...
•  Patients used the PHR a mean of 42.1 times
during the 1-year intervention period. 
•  In the PHR group, the total propo...
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
Liquidity
transforms
what’s possible
because it
alters the availability
of a vital resource.
Not Liquid
•  Moving it takes effort
•  Slow and predictable
•  Unexplained arrivals
are suspicious
Not Liquid Liquid
•  Moving it takes effort
•  Slow and predictable
•  Unexplained arrivals
are suspicious
•  Frictionless...
In the patient-
centered world,
who gets to say
what value is?
(In all other quality fields, quality is defined by the
ult...
If the microscope’s happy
but the patient’s not,
has care been achieved?
If the microscope’s happy
but the patient’s not,
has care been achieved?
Has optimal care??
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...
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...
Top things IVF patients asked for
•  I want insurers to reimburse six attempts. 
•  I want insurance companies to only cou...
Top things IVF patients asked for
•  I want insurers to reimburse six attempts. 
•  I want insurance companies to only cou...
Note also:
in the patient’s view,
success is achievement
(not obedience)
Compliance
(Whose goal is it, anyway?)
Achievement!
Speaking of
the patient’s view…
©
•  0: Haha! I'm not
wearing any pants!
©
•  0: Haha! I'm not
wearing any pants!
•  2: Awesome!
Someone just offered
me a free hot dog!
©
•  0: Haha! I'm not
wearing any pants!
•  2: Awesome!
Someone just offered
me a free hot dog!
•  4: Huh. I never knew
that...
•  0: Haha! I'm not
wearing any pants!
•  2: Awesome!
Someone just offered
me a free hot dog!
•  4: Huh. I never knew
that...
•  0: Haha! I'm not
wearing any pants!
•  2: Awesome!
Someone just offered
me a free hot dog!
•  4: Huh. I never knew
that...
•  0: Haha! I'm not
wearing any pants!
•  2: Awesome!
Someone just offered
me a free hot dog!
•  4: Huh. I never knew
that...
©
Protecting
the public
Can we measure…
Dissemination
of new knowledge?
Patients assume !
their clinicians know and use !
the best available metho...
Physician adoption of new
practices years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, inYea...
Physician adoption of new
practices years after discovery
The “17 years” thing
From A. Balas, Institute of Medicine, inYea...
From
The Fourth Paradigm
by Microsoft Research
Scurvy"
264!
years!"
From
The Fourth Paradigm
by Microsoft Research
Scurvy"
264!
years!"
From
The Fourth Paradigm
by Microsoft Research
Shortfalls:
RobynTamblyn’s data
Can we measure…
Accurate,
careful management
of health IT?
Pre-op:“At least you won’t be lopsided.”
“What do you mean?”
“You’re getting a bilateral mastectomy.”
“No I’m not!”
“That’...
Can we measure…
Good communication
skills with the
computer involved?
People perform better
when they’re
informed better.
It’s perverse
to keep people
in the dark
and call them ignorant
Corollary:
“How can patients participate if they can’t
see what I see?” – Dr.Danny Sands
Can we measure…
Ability to help
patients take
advantage of
available data?
•  99% of patients wanted to continue"
•  99% of patients wanted to continue"
•  17-26% of docs preferred not to…"
– But when given the chance to stop, none did"
•  99% of patients wanted to continue"
•  17-26% of docs preferred not to…"
– But when given the chance to stop, none did"...
“My patients
aren’t like that.”
“They aren’t
asking for this.”
Can we be sure
we don’t underestimate?
Congrats:
Fewer neckties,
more X
Next step:
Add
anasouptics!
There’s a
thread
you follow
Protecting
the public
Paternalistic caring
“No, honey –
you don’t know
what you need.”
“I’ll take care of you.”
Sensible – up to a point
“I’ll d...
Nothing you do
can stop time’s
unfolding.
You don’t ever
let go of the thread.
Please
JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDav...
JAMIA, 1997
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDave
LinkedIn.com / in / ePatientDav...
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
National Board of Medical Examiners 100th Annual Meeting (plenary), 2014
Upcoming SlideShare
Loading in …5
×

National Board of Medical Examiners 100th Annual Meeting (plenary), 2014

1,091 views

Published on

Published in: Health & Medicine, Business
  • Be the first to comment

  • Be the first to like this

National Board of Medical Examiners 100th Annual Meeting (plenary), 2014

  1. 1. JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help Heal Healthcare
  2. 2. JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help DefineWhat Care Is
  3. 3. “I want to note especially the importance of the resource that is most often under- utilized in our information systems – our patients” Charles Safran MD, Beth Israel Deaconess quoting his colleague,Warner Slack MD Testimony to the HouseWays & Means subcommittee on health, 2004
  4. 4. How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer discovery & recovery
  5. 5. How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer discovery & recovery •  2008: E-Patient blogger •  2009: Participatory Medicine, Public Speaker •  2010: full time •  2011: international
  6. 6. I do slogans.
  7. 7. I do slogans.
  8. 8. I do slogans.
  9. 9. I do slogans.
  10. 10. I do slogans.
  11. 11. JAMIA, 1997
  12. 12. e-Patients.net founder Tom Ferguson MD 1944-2006
  13. 13. e-Patients.net founder Tom Ferguson MD 1944-2006 Equipped Engaged Empowered Enabled” Doc Tom said, “e-Patients are
  14. 14. JAMIA, 1997
  15. 15. on.TED.com/Dave
  16. 16. on.TED.com/Dave
  17. 17. JAMIA, 1997 USMLE: 1989
  18. 18. I owe my well-being to these USMLE victims: Dr. David McDermott, Oncologist 1991-2
  19. 19. I owe my well-being to these USMLE victims: Dr. David McDermott, Oncologist 1991-2 Dr. Andrew Wagner, Urologist/surgeon 1998, 1999, 2001
  20. 20. I owe my well-being to these USMLE victims: Dr. David McDermott, Oncologist 1991-2 Dr. Andrew Wagner, Urologist/surgeon 1998, 1999, 2001 Dr. Megan Anderson, Orthopedic surgeon 1996
  21. 21. There’s a thread you follow
  22. 22. Me? An indicator of the future?? •  Who’s getting online: –  1989: Me (CompuServe sysop) –  2009: 83% of US adults (Pew)
  23. 23. 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
  24. 24. 2007: My “Incidental Finding” Routine shoulder x-ray, Jan. 2, 2007 Your%shoulder% %%will%be%fine%…% %%but%there's%% %%something%% %%in%your%lung %
  25. 25. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site
  26. 26. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company's web site Median Survival: 24 weeks
  27. 27. E-Patient Activity 2: My doctor prescribed ACOR (Community of my patient peers)
  28. 28. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  29. 29. Question:
  30. 30. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  31. 31. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  32. 32. If I read two journal articles every night, at the end of a year I’d be 400 years behind. It’s not humanly possible to keep up. Dr. Lindberg: 400 years
  33. 33. The lethal lag time: 2-5 years During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things. The time it takes after successful research is completed before publication is completed and the article’s been read.
  34. 34. Compare with To Err is Human (98,000 deaths/yr Nov 1999) Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)
  35. 35. It may be more dangerous not to google your condition.
  36. 36. These conclusions are no more anti-doctor or anti-medicine than Copernicus and Galileo were anti-astronomer. Patients can simply contribute more today than in the past.
  37. 37. Problem(?) Chronic Disease Epidemic CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death# Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM% Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#
  38. 38. Problem(?) Chronic Disease Epidemic CDC#(2004)#Ten#Great#Public#Health#Achievements#in#the#20th#Century#&#Leading#Causes#of#Death# Jones#(2012)#The#Burden#of#Disease#and#the#Changing#Task#of#Medicine.#NEJM% Used#with#permission#of#John#O.#Moore#MD,#PhD#####newmed.media.mit.edu#
  39. 39. My classmate Jay
  40. 40. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
  41. 41. There’s a thread you follow
  42. 42. Protecting the public
  43. 43. •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period. 
  44. 44. •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period.  •  In the PHR group, the total proportion of eligible preventive services received …
  45. 45. •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period.  •  In the PHR group, the total proportion of eligible preventive services received ... –  increased from 24% at baseline to 40%  at the 12-month follow-up, whereas 
  46. 46. •  Patients used the PHR a mean of 42.1 times during the 1-year intervention period.  •  In the PHR group, the total proportion of eligible preventive services received ... –  increased from 24% at baseline to 40%  at the 12-month follow-up, whereas  –  it declined in usual care group, from 25% to 18%. 
  47. 47. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  48. 48. Liquidity transforms what’s possible because it alters the availability of a vital resource.
  49. 49. Not Liquid •  Moving it takes effort •  Slow and predictable •  Unexplained arrivals are suspicious
  50. 50. 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
  51. 51. In the patient- centered world, 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.)
  52. 52. If the microscope’s happy but the patient’s not, has care been achieved?
  53. 53. If the microscope’s happy but the patient’s not, has care been achieved? Has optimal care??
  54. 54. 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?
  55. 55. 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.”
  56. 56. 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.”
  57. 57. 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. 
  58. 58. 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. 
  59. 59. 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
  60. 60. Note also: in the patient’s view, success is achievement (not obedience)
  61. 61. Compliance (Whose goal is it, anyway?) Achievement!
  62. 62. Speaking of the patient’s view…
  63. 63. ©
  64. 64. •  0: Haha! I'm not wearing any pants! ©
  65. 65. •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! ©
  66. 66. •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. ©
  67. 67. •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. •  6: I'm sorry about your cat, but can we talk about some- thing else now? I'm bored. ©
  68. 68. •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. •  6: I'm sorry about your cat, but can we talk about some- thing else now? I'm bored. •  8: The ice cream I bought barely has any cookie dough chunks. I am disappointed. ©
  69. 69. •  0: Haha! I'm not wearing any pants! •  2: Awesome! Someone just offered me a free hot dog! •  4: Huh. I never knew that about giraffes. •  6: I'm sorry about your cat, but can we talk about some- thing else now? I'm bored. •  8: The ice cream I bought barely has any cookie dough chunks. I am disappointed. •  10: You hurt my feelings and now I'm crying! ©
  70. 70. ©
  71. 71. Protecting the public
  72. 72. Can we measure… Dissemination of new knowledge? Patients assume ! their clinicians know and use ! the best available methods. "
  73. 73. Physician adoption of new practices years after discovery The “17 years” thing From A. Balas, Institute of Medicine, inYearbook of Medical Informatics 2000 Creative Commons Attribution / Share-Alike May be distributed with this license included
  74. 74. 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 Creative Commons Attribution / Share-Alike May be distributed with this license included
  75. 75. From The Fourth Paradigm by Microsoft Research
  76. 76. Scurvy" 264! years!" From The Fourth Paradigm by Microsoft Research
  77. 77. Scurvy" 264! years!" From The Fourth Paradigm by Microsoft Research
  78. 78. Shortfalls: RobynTamblyn’s data
  79. 79. Can we measure… Accurate, careful management of health IT?
  80. 80. 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.”
  81. 81. Can we measure… Good communication skills with the computer involved?
  82. 82. People perform better when they’re informed better.
  83. 83. It’s perverse to keep people in the dark and call them ignorant Corollary:
  84. 84. “How can patients participate if they can’t see what I see?” – Dr.Danny Sands
  85. 85. Can we measure… Ability to help patients take advantage of available data?
  86. 86. •  99% of patients wanted to continue"
  87. 87. •  99% of patients wanted to continue" •  17-26% of docs preferred not to…" – But when given the chance to stop, none did"
  88. 88. •  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"
  89. 89. “My patients aren’t like that.” “They aren’t asking for this.” Can we be sure we don’t underestimate?
  90. 90. Congrats: Fewer neckties, more X
  91. 91. Next step: Add anasouptics!
  92. 92. There’s a thread you follow
  93. 93. Protecting the public
  94. 94. Paternalistic caring “No, honey – you don’t know what you need.” “I’ll take care of you.” Sensible – up to a point “I’ll decide for you.”
  95. 95. Nothing you do can stop time’s unfolding.
  96. 96. You don’t ever let go of the thread.
  97. 97. Please
  98. 98. JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help Heal Healthcare
  99. 99. JAMIA, 1997 “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave Let Patients Help DefineWhat Care Is

×