This document outlines Dave deBronkart's journey from being diagnosed with cancer in 2007 to becoming a prominent advocate for patient engagement and empowerment. It discusses how he used online resources and connected with other patients online to research his condition, treatment options, and find doctors. This marked a transformation from a closed medical system to an open network where patients can access information and support from each other. The document argues that engaged, empowered patients will be an essential part of the healthcare system going forward to address the growing demographic of older patients. It suggests the concept of patient engagement is going through a paradigm shift as more recognize the importance of patient perspectives in care.

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Patient Engagement and
Empowerment:
A Culture War Begins

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. People perform
better when they’re
informed better.

4. It’s perverse
to keep people
in the dark
and call them ignorant
Corollary:

5. Patient is not
a third person word.
Your time will come.

6. “It can be argued
that the largest
yet most neglected
health care
resource,
worldwide,
is the patient…”

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

9. Pt of future

11. 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

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

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

14. Multiple tumors in both lungs
Where’s This From??

15. E-Patient Activity 1:
Researching my condition

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

17. Facing Death
17

18. My mother
18

19. My daughter
19

20. After the shock
you’re left with the question:
What are my options?
What can I do?
20

21. Get engaged.
Get it in gear.
Do everything you can.
21

22. “My doctor prescribed ACOR”
(Community of my patient peers)

23. ACOR patients 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

24. ACOR gave me:
• Information from people like me
– Trust
• People who see the problems
the way I do
• Practical information about
side effects
24

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

27. Question:

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

29. Because of the Web,
Patients Can Connect to Information
and Each Other (and other Providers)

30. Closed system Open network
Transformation of Knowledge Access
Slide by @ePatientDave 2015
Based on Engelen & Derksen, 2010

31. This is no insult
to physicians

32. It simply alters
what patients and families
can bring to the table

34. The Institute of Medicine says
(Best Care at Lower Cost, 2012)
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.

35. And yet:
some people
don’t get it.

36. 2014

37. Sometimes
fatally.

38. Reported June 2015

39. Some do get it.

40. 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

41. 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
Clinical trials - where to get involved?
1/6/16
clinical question/
problem
doing things right à à àß ß ß doing the right thing
© Bettina Ryll MD/PhD

42. 1957

43. 1962
“Kuhn thought not
only that there are
scientific revolutions
but also that they
have a structure.”
-- Ian Hacking’s introduction
to the 50th anniversary
edition, 2012

44. “Kuhn’s insistence
that a paradigm shift
was a mélange of
sociology, enthusiasm
and scientific
promise,
but not a logically
determinate
procedure,
caused an uproar”
--Wikipedia

45. Stages a scientific
field goes through
• Normal science
• Puzzle solving
• Paradigm
• Anomaly
• Crisis
• Revolution

46. By what reasoning do we say
that a new field of study
is justified NOW?
What has changed?

47. The state of
patient engagement
today:
A puzzle with no
agreed paradigm.

48. Many
frameworks

49. Many conceptions of
patients’ nature
• Compliant?
• Autonomous?
• Collaborative?

50. Result:
• Inconsistent standards of practice
unwarranted by any evidence
regarding appropriate patient actions
• Lack of policy support
for patient and family engagement

51. Urgency:
The Demographic
Crunch

52. Half of everyone who’s
ever been 65 is alive today
Population today: ~7.0 billion
End of World War II: ~2.3 billion

53. My classmate Jay

54. The demographic
imperative

55. The demographic
imperative

56. The demographic
imperative

57. “Your time
will come”

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

61. It’s great
to be alive.

62. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
We Perform Better
When We’re
Informed Better.
62