NI2016 is the Nursing Informatics conference, in a different country every other year; this year it's Geneva, Switzerland. This talk focused on how nursing informatics can empower patients and families by sharing medical data.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
How e-Patients
are changing healthcare
1

2. 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

3. Important principle:
“Patient” is not
a third person word.
Your time will come.

4. e-Patients.net founder
Tom Ferguson MD
1944-2006

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

7. Pt of future

9. Me?An indicator
of the future??
• Who’s getting online:
– 1989: Me (CompuServe sysop)
– 2009: 76% of US adults online
• 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

10. The Engaged Patient
12 items in my pre-appointment “agenda” email

11. The “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there’s
something
in your lung”

12. MultipleTumors in Both Lungs
Where’s This From??

13. PrimaryTumor:Kidney

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

15. My doctor prescribed ACOR
(Now: SmartPatients.com)

16. ACOR patients told me:
• Welcome to the club.
We know how you feel.

17. ACOR patients told me:
• This is an uncommon disease –
get to a hospital that does a lot of cases
• There is 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

18. Surgery & Interleukin worked.
Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm

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

22. “E-Patient
White Paper”

23. “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

24. 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.

25. “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.

26. Because of theWeb,
Patients Can Connect to Information
and Each Other (and other Providers)

27. Institute of Medicine – Sept 2012
382 page report:“Best Care at Lower Cost”

28. Institute of Medicine – Sept 2012
382 page report:“Best Care at Lower Cost”

29. 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.

30. Important question:
Where does
useful information
come from?

32. Remember:
People perform better
when we’re
informed better.

33. Hugo Campos wants his ICD data

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

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

37. #OpenAPS & @DanaMLewis
(Open SourceArtificial Pancreas System)

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

41. “Your time will come”
Mine did.

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

44. How can we empower
patients and families
to improve their health
and their care?

45. 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

46. ì

47. “How can patients participate if they can’t
see what I see?” – Dr.Danny Sands

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

50. • 99% of patients wanted to continue
• 17-26% of doctors 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

51. Get Involved inYour Data.
Quality Matters.

52. 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.”

55. Empowered families can help –
if they have the information

56. Do you know
what’s in your
family’s records?

57. eHealth Law (2017) e-health-suisse.ch
For patients:
• Free, voluntary EHR
• You define doctors’
access rights
• See all data on portal
For HCPs:
• Hospitals: 2020
• Retirement homes 2022
• Cloud
• Intercantonal data
sharing

58. Obstacle to adoption:
“But patients
don’t want this.”

59. Until people realize
they have the power
to ask,
they don’t ask

64. We are at the start
of a new
cultural awakening.

65. Enabled by putting
information in the hands
of people who can use it

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

67. How a kidney cancer wife
found the info she needed
• No insurance;
no treatment.Then:
• Three bad hospitals;
no help.Then:
• A friend said
“I know a guy...
on Twitter”

68. TheWalking Gallery
ReginaHolliday.blogspot.com

69. “Gimme My DaM Data”
dave.pt/datasong

70. • The French edition
wants a publisher –
contact
@tinaburger in
Lausanne

71. Impliquons
les Patients!
• The French
print edition
wants a publisher!
Contact
@tinaburger
in Lausanne

72. October 2007December 2006 May 2009
2.8 e-PatientYears in Pictures

75. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Let Patients Help
improve healthcare
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