Expanded version of a short panel presentation on the subject of mHealth. My point was that mHealth has meaning only in the larger context of an important reality: the best quality care depends on having the best information, so THAT is what we need to be thinking about.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Amazing changes
in who has information
are giving patients power
1

2. How I came to be here
• Business: 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

3. Institute of Medicine – Sept 2012
Major New Report:“Best Care at Lower Cost”

4. The IOM 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.

7. When the
center of a system changes,
everything in the system
may need to be rebalanced
and rethought

8. The main question
in every medical case:
“What is
the best thing
to do?”

9. The answer
depends on
information and judgment.

10. Information technology
is changing
and patients have a voice
in how to decide.

11. ì

12. mHealth puts knowledge
in our pockets.
It changes
what patients are able to do.
Caution: it’s starting
to change
what patients WANT to do.

13. It builds
capacity.

14. Change #1:
How does information move
to the point of need?

15. Transformation of Knowledge Access
“Information
artery”
Subject to
clogs
and delays
The point
of need

16. “E-Patient
White Paper”

17. “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.
Even when lives are at stake.
Dr. Lindberg: 400 years
2013: 1100 years

18. Social Media is like
“information capillaries”

19. Closed system Open network
Transformation of Knowledge Access

20. Change #2:
Where does
useful information
come from?

21. Kardia (née “AliveCor”):
Smartphone ECG

22. Hugo Campos
@hugooc
HugoOC@gmail.com
My first year with
the AliveCor
February 8, 2013

25. #DIYPS & @DanaMLewis
(“Do-it-yourself Pancreas System”

26. #DIYPS
(“Do-it-yourself Pancreas System”

28. “Quantified Self” #OpenAPS
Public Health
San Diego, May 18
(n=1)*59(n=1)*59
June 3, White House: *75

30. Withings
Withings Wi-Fi scale
Fitness wristband & heart band
YMCA Diabetes Prevention Class
(food training & physical activity)
MyFitnessPal diet tracking app
Strong spousal support
My doctors can’t see this in their computers!

31. p.s.: My doctors
can’t see this
in their computers!
OMG, I’m a runner now

32. Change #3:
How do we decide
whether it is reliable?

33. Transformation of Knowledge Access
“Information
artery”
Subject to
clogs
and delays
The point
of need
and pollution

35. After 30 years of practicing peer review
and 15 years of studying it experimentally,
I’m unconvinced of its value.
Evidence on the upside of peer review is sparse,
whereas evidence on the downside is abundant.
Most of what appears in peer reviewed journals
is scientifically weak.
Richard Smith, 25 year editor
of the British Medical Journal, 2009

38. Change #4:
Who decides
which factors
are important?
Who can say
“We forgot to think about this”

42. June 11, 2014
• Patient advisory panel
• Patient peer review
of research papers
• Authors are to document
how they involved patients in defining
the question and outcome measures

43. “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.

44. impact on patients è è à à
à à à current patient involvement è
trial management,
e.g. consent, patient
information leaflets,
trial adherence
patient recruitment
e.g. providing information on
clinical trials, advertising trials
clinical trial
design
Dr. Bettina Ryll – researcher and family caregiver
When should we bring patients
into the clinical trials process?
6/5/16
clinical question/
problem
Make sure patients are
doing things right à à à
ß ß ß Make sure researchers
are doing the right thing
© Bettina Ryll MD/PhD

45. September 29, 2014

46. September 29, 2014

47. • <meta name="article.headline” content=”
“In a dramatic shift,
patients are helping researchers
design clinical trials of
new drugs”
/>
Culture clash:What they wrote

48. Culture clash: In print

53. Change #5:
Our understanding
of what a disease is!

55. Ignaz Semelweiss (1818-1865)
“Despite various publications of
results where hand-washing
reduced mortality to below 1%,
Semmelweis’s observations
conflicted with the
established scientific and
medical opinions of the time
and his ideas were rejected by
the medical community…

56. Microbes
Koch’s postulates
125 years ago

57. Cancer
Broken DNA
25 years ago

58. Personalized medicine
Eric Dishman of Intel
• Kidney cancer age 19
– Prognosis: 9 months (wrong)
• 2010: genome sequenced
– Took seven months
• “Your cancer is in your
kidney but it acts like
pancreatic. New chemo.”
• Three months later: clear!
Personalized medicine
Eric Dishman of Intel National Institutes of Health

59. Notice:
It’s clear that patients
are not setting
the priorities here

60. Change #6:
After you learn
a medical fact,
how long does it
continue to be true?

63. 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.

64. Reported June 2015

65. Reported June 2015

66. “A new scientific truth
does not triumph
by convincing its opponents
and making them
see the light,
but rather because
its opponents eventually die,
Nobel Prize winner Max Planck
and a new generation grows up
that is familiar with it.”

67. Change #7:
Who is capable
of making these decisions
about priorities?

68. Paternal care
“No, honey –
you don’t know
what you need.”
“I’ll take care of you.”
It’s important – up to a point
“I’ll decide for you.”

69. Zoe
When does
autonomy
become
appropriate?

70. Empowerment
An empowering approach
treats patients as co-producers
with authority and control
at the lowest possible level.

71. And that’s just a start.
1. How information moves to the point of need
2. Where useful information arises
3. How do we decide whether it’s reliable?
4. How do we decide what to measured?
5. Our understanding of what a disease is!
6. How long does an answer stay stable?
7. Who is capable of deciding all this?
8. … to be continued

74. The main question
in every medical case:
“What is
the best thing
to do?”

75. The answer
depends on
information and judgment.

76. mHealth puts knowledge
in our pockets.
It changes
what patients are able to do.
It’s starting to change
what patients WANT to do.

77. The IOM 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.

78. @MightyCasey, e-patient

79. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Amazing changes
in who has information
are giving patients power
79