JAMIA, 1997Help
Patients

Let
Heal Healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDa...
How I came to be here
•  High tech marketing
•  Data geek; tech trends; automation
•  2007: Cancer discover & recovery
•  ...
“I want to note especially
the importance of the resource
that is most often underutilized in our information
systems – ou...
Doc Tom said,

“e-Patients are

e-Patients.net founder
Tom Ferguson MD
quipped

E
Engaged
Empowered
Enabled”
1944-2006
Pt of future
Me? An indicator •  Who’s getting online:
–  1989: Me (CompuServe sysop)
of the future??
–  2009: 83% of US adults (Pew)
•...
The Engaged Patient

12 items in my pre-appointment “agenda” email
The Incidental Finding
Routine shoulder x-ray, Jan. 2, 2007

“Your&shoulder&
&&will&be&fine&…&
&&but&there’s&&
&&something&...
Multiple tumors in both lungs
Where’s This From??
Primary Tumor: Kidney
E-Patient Activity 1:
Researching my condition
Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company’s
web site

Median Survival:
24 weeks
Facing the Reaper
My mother
My daughter
After the shock
you’re left with the question:
What are my options?
What can I do?
Get engaged.
Get it in gear.
Do everything you can.
E-Patient Activity 2:
“My doctor prescribed ACOR”
(Community of my patient peers)
ACOR members told me:
•  This is an uncommon disease –
get to a hospital that does a lot of cases
•  There’s no cure, but ...
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...
Dr. Lindberg: 400 years
“If I read two journal articles every night,
at the end of a year I’d be 400 years behind.”

It’s ...
The lethal lag time:
2-5 years

The time it takes after successful research is completed
before publication is completed a...
Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)
Death by Googling:
Not.

(Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search)

Compare with

- “To Err i...
“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 ...
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...
Can we measure…

“Engaged,
empowered
patients”?
What Does it Mean to Be Activated ?
!Ac$va$on!Level!is!Predic$ve!of!Behaviors!
Research(consistently(finds(that(those(who(are(more(
ac3vated(are:(
–  Engaged(i...
(Ac3va3on(is(developmental(

Source: J.Hibbard, University of Oregon
Behaviors!in!Medical!Encounter!!
by!Ac$va$on!Level!!
How engaged are YOU?
Urgency:
The Demographic
Crunch
Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu(

Problem(?)

Chronic Disease Epidemic

CDC((2004)(...
Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu(

Problem(?)

Chronic Disease Epidemic

CDC((2004)(...
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
“How can patients participate if they can’t
see what I see?” – Dr. Danny Sands
Can we measure…

Accurate,
careful management
of important
information?
@Xeni

Live tweeting, 12-18-2011

“Now I know why docs
don’t give you scan data.
I see the Virgin Mary,
Jimmy Hoffa, sever...
@Xeni

Next day: 12-19-2011

“So I figure out how to open
my bone scan data. I look.”
“What the...”
“What’s that ****-shap...
Pre-op: “At least you won’t be lopsided.”
“What do you mean?”
“You’re getting a bilateral mastectomy.”
“No I’m not!”
“That...
Who has the most at stake
with the accuracy,
completeness and
availability
of the medical record?
Data quality is
essential.
Let Patients Help.
Objection:
“My patients
aren’t like that.”
“They aren’t
asking for this.”
Put empowering
information
in consumers’
hands
Dr. Eric Topol
AliveCor: iPhone EKG
12/3/12:
“FDA clears iPhone heart
monitor, doctors can pre-order”
Feb 2014: OTC
My first year with
the AliveCor

Hugo Campos
@hugooc
HugoOC@gmail.com

February 8, 2013
Next Lesson:

When assets digitize,
things move fast.
2.8 e-Patient Years in Pictures…
December 2006

October 2007

May 2009
JAMIA, 1997Help
Patients

Let
Heal Healthcare
“e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com / ePatientDa...
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
British Columbia Pt Safety & Quality Council, Feb. 2014
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British Columbia Pt Safety & Quality Council, Feb. 2014

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e-Patient Dave talk at British Columbia Patient Safety Quality Council annual meeting, Feb. 2014, in Vancouver

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British Columbia Pt Safety & Quality Council, Feb. 2014

  1. 1. JAMIA, 1997Help Patients Let Heal Healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave
  2. 2. How I came to be here •  High tech marketing •  Data geek; tech trends; automation •  2007: Cancer discover & recovery •  2008: E-Patient blogger •  2009: Participatory Medicine, Public Speaker •  2010: full time •  2011: international
  3. 3. “I want to note especially the importance of the resource that is most often underutilized in our information systems – our patients” Charles Safran MD, Beth Israel Deaconess quoting his colleague,Warner Slack MD Testimony to the House Ways & Means subcommittee on health, 2004
  4. 4. Doc Tom said, “e-Patients are e-Patients.net founder Tom Ferguson MD quipped E Engaged Empowered Enabled” 1944-2006
  5. 5. Pt of future
  6. 6. Me? An indicator •  Who’s getting online: –  1989: Me (CompuServe sysop) of the future?? –  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
  7. 7. The Engaged Patient 12 items in my pre-appointment “agenda” email
  8. 8. The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007 “Your&shoulder& &&will&be&fine&…& &&but&there’s&& &&something&& &&in&your&lung”&
  9. 9. Multiple tumors in both lungs Where’s This From??
  10. 10. Primary Tumor: Kidney
  11. 11. E-Patient Activity 1: Researching my condition
  12. 12. Classic Stage IV, Grade 4 Renal Cell Carcinoma Illustration on the drug company’s web site Median Survival: 24 weeks
  13. 13. Facing the Reaper
  14. 14. My mother
  15. 15. My daughter
  16. 16. After the shock you’re left with the question: What are my options? What can I do?
  17. 17. Get engaged. Get it in gear. Do everything you can.
  18. 18. E-Patient Activity 2: “My doctor prescribed ACOR” (Community of my patient peers)
  19. 19. ACOR members told me: •  This is an uncommon disease – get to a hospital that does a lot of cases •  There’s no cure, but HDIL-2 sometimes works. –  When it does, about half the time it’s permanent –  The side effects are severe. •  Don’t let them give you anything else first •  Here are four doctors in your area who do it –  And one of them was at my hospital
  20. 20. Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe Baseline: 39x43 mm 50 weeks: 20x12 mm
  21. 21. Question:
  22. 22. How can it be that the most useful and relevant and up-to-the-minute information can exist outside of traditional channels?
  23. 23. Dr. Lindberg: 400 years “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.
  24. 24. The lethal lag time: 2-5 years The time it takes after successful research is completed before publication is completed and the article’s been read. During this time, people who might have benefitted can die. Patients have all the time in the world to look for such things.
  25. 25. Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
  26. 26. Death by Googling: Not. (Dr. Gunther Eysenbach, Europe: 0 deaths found in a three year search) Compare with - “To Err is Human” (98,000 deaths/yr Nov 1999)
  27. 27. “It may be more dangerous not to google “your condition.”
  28. 28. “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.
  29. 29. Institute of Medicine – Sept 2012 Major New Report: “Best Care at Lower Cost”
  30. 30. 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.
  31. 31. Can we measure… “Engaged, empowered patients”?
  32. 32. What Does it Mean to Be Activated ?
  33. 33. !Ac$va$on!Level!is!Predic$ve!of!Behaviors! Research(consistently(finds(that(those(who(are(more( ac3vated(are:( –  Engaged(in(more(preven3ve(behaviors( –  Engaged(in(more((healthy(behaviors( –  Engaged(in(more(disease(specific(self< management(behaviors( –  Engaged(in(more(health(informa3on(seeking( behaviors(
  34. 34. (Ac3va3on(is(developmental( Source: J.Hibbard, University of Oregon
  35. 35. Behaviors!in!Medical!Encounter!! by!Ac$va$on!Level!!
  36. 36. How engaged are YOU?
  37. 37. Urgency: The Demographic Crunch
  38. 38. Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu( 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&
  39. 39. Used(with(permission(of(John(O.(Moore(MD,(PhD(((((newmed.media.mit.edu( 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&
  40. 40. My classmate Jay
  41. 41. Half of everyone who’s ever been 65 is alive today Population today: ~7.0 billion End of World War II: ~2.3 billion
  42. 42. “How can patients participate if they can’t see what I see?” – Dr. Danny Sands
  43. 43. Can we measure… Accurate, careful management of important information?
  44. 44. @Xeni Live tweeting, 12-18-2011 “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.”
  45. 45. @Xeni Next day: 12-19-2011 “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.”
  46. 46. 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.”
  47. 47. Who has the most at stake with the accuracy, completeness and availability of the medical record?
  48. 48. Data quality is essential. Let Patients Help.
  49. 49. Objection: “My patients aren’t like that.” “They aren’t asking for this.”
  50. 50. Put empowering information in consumers’ hands
  51. 51. Dr. Eric Topol
  52. 52. AliveCor: iPhone EKG 12/3/12: “FDA clears iPhone heart monitor, doctors can pre-order” Feb 2014: OTC
  53. 53. My first year with the AliveCor Hugo Campos @hugooc HugoOC@gmail.com February 8, 2013
  54. 54. Next Lesson: When assets digitize, things move fast.
  55. 55. 2.8 e-Patient Years in Pictures… December 2006 October 2007 May 2009
  56. 56. JAMIA, 1997Help Patients Let Heal Healthcare “e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com / ePatientDave LinkedIn.com / in / ePatientDave dave@epatientdave.com Skype: ePatientDave

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