Dinner meeting of the MIT Club of New Hampshire, March 2018.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Empowered, engaged,
equipped, enabled:
How “e-patients” can help
healthcare achieve its potential

3. His “survivor mission” for us:
Register to be an organ donor,
no matter what.

4. 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 speaking
• 2010: Full time
• 2011: international
• 2012: med schools, advisory, consult
• 560+ events, 18 countries,
1400 blog posts, 11 universities,
18 articles, 2 book chapters

5. Medicine is in
the best of times,
the worst of times.

6. 1969

7. Classmate Jay Pollack ’72

8. The healthcare future,
when Jay and I were born

9. Today:
Medicine and population health
are preventing lots of those deaths

10. 34 years from now:
a truly unprecedented
population profile

11. 2/3 of everyone who’s
ever been 65 is alive today
Population today: ~7.0 billion
End of World War II: ~2.3 billion
11

12. And yet:

13. Lesson:
Somehow,
somewhere
in there,
the system’s
structured
to keep
growing.

14. And yet:

15. “Amenable mortality”

17. a + b = ?

18. Lesson:
The system is optimized
around things other than
getting the job done.

19. Our question tonight:
How can YOU
help healthcare
achieve its potential
when trouble hitsYOU?

20. Fundamental principle 1:
“Patient”
is not a third person word
Your time will come.

21. You may be able to help.
Fundamental principle 2:
Medicine can’t
achieve its potential
if useful information is missing.

22. e-Patients.net founder
Tom Ferguson MD
1944-2006
Equipped
Engaged
Empowered
Enabled
Doc Tom said,
e-Patients are

23. March 18 @DrDannySands

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. Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Illustration on
the drug company’s
web site
Median Survival:
24 weeks

26. My doctor prescribed ACOR
(Community of my patient peers)

27. My patient peers 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

28. My patient peers 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

29. Surgery & Interleukin worked

32. How can it be
that the most useful
and relevant and
up-to-the-minute information
can exist outside of
traditional channels?

33. Donald Lindberg MD
Director of the National Library of Medicine
“If I read two journal articles every night,
at the end of a year I’d be 400 years behind.” (2004)
2013 (NLM):
• 2,200 articles are published every day
• Doctors must know 10,000 conditions
• Patients can focus only on their own.

34. Because of the Web, patients can
connect to information and each other

35. Social media:“Information capillaries”

36. Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on
Engelen & Derksen 2010 at
Closed system Open network
Slide by @ePatientDave 2015
based on Engelen & Derksen 2010 at
Transformation of Knowledge Access

37. I’m Alive Thanks to Precision Medicine
… and Other Pa2ents
© Janet Freeman-Daily 2015 -- @JFreemanDaily -- grayconnections.net 40
Stage 3a
NSCLC
05/2011
Stage 3b/
4
10/2011
Metasta2c
09/2012
Clinician
No Evidence of Disease since 12/31/2012
chemo-
rad
Pa2ent
chemo rad
clinical trial (crizo2nib for ROS1 NSCLC)
EGFR,
ALK neg
Submit
slides for
gene panel
Request
pathology
results
Visit U of Colorado
Hospital
request ROS1/RET tests
enroll in clinical trial
ROS
1
pos
10-gene
panel neg
travel to site, take meds, labs/scans, track SEs
Interact online with lung cancer pa=ents and follow research developments
@JanetFD (Janet Freeman-Daily)

38. Cognitive dissonance sets in,
and the mind seeks to resolve it
“It’s because they’re
MIT graduates.”

39. Kim Goodsell

40. Kim Goodsell

41. You know
it’s a revolution
when the artists and
musicians show up.

42. #PinkSocks

43. Regina militant fist

44. The Walking Gallery
ReginaHolliday.blogspot.com

45. Video:
dave.pt/datasong

46. What you can do to help, #1:
Check your family’s charts
before there’s a crisis.
All of them.

47. • Up to 95% of medication lists
were found to have mistakes
• ~90% of patients requested
changes to their records.
• ~80% were accepted by the
doctors
• Geisinger doctor:
“If we don't have
accurate data we can't
take care of patients
appropriately”

48. What you can do to help, #2:
Ask your clinicians
to do the “Human / Level”
thing: share their screen

49. Best Prac*ce Mnemonics for EHR Use:
“HUMAN” and “LEVEL”
H Honor the “Golden Minute,” with first minutes tech-free
U Use the (equilateral) triangle of trust
M Maximize pa2ent interac2on
A Acquaint yourself with pa2ent record, ideally before the visit
N Nix the technology and keep eye contact (hands off keyboard)
when pa2ent is discussing a sensi2ve topic
L Let the pa2ent look on
E Eye contact with pa2ent
V Value the computer as a tool
E Explain what you are doing as you do it
L Log off and tell the pa2ent
March 18 @DrDannySands @ePa2entDave
Source: Permanente Federa2on
2004 c/o Larry Garber, MD,
and Wei Wei Lee, MD

50. March 18 @DrDannySands

51. What you can do to help, #3:
Ask for OpenNotes
and OurNotes

52. OpenNotes.org
What happens
when patients see
their doctors’
notes?

53. • 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

55. What you can do to help, #4:
Know your hospitals’
safety scores

56. HospitalSafetyGrade.org

57. What you can do to help, #5:
For elders:
“Better Health While Aging”
podcast

58. Dr. Leslie Kernisan
Podcast & website
“Practical information
for senior health &
family caregivers”

59. What you can do to help, #6:
For all ages:
Ask about “case managers.”

60. Nov
2016

63. Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on
Engelen & Derksen 2010 at
Closed system
Open network
Slide by @ePatientDave 2018
based on Engelen & Derksen 2010 at
Current Reality
Closed system
Common perception

64. You may be able to help.
Medicine can’t
achieve its potential
if useful information is missing.

65. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Empowered, engaged,
equipped, enabled:
How “e-patients” can help
healthcare achieve its potential