Opening keynote at DIA Europe, Vienna, Feb 5, 2019. Our paradigm of patient is significantly out of date, and it's holding back progress - a new class of "Superpatients" are *extending* science when the doctors are out of answers. Amazing!

1. Dave deBronkart
Twitter: @ePatientDave
dave@epatientdave.com
Patient Experience,
Empowerment, Engagement: A
Business Leader’s View

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

3. If you live long enough,
things change.
So don’t be surprised
if new things are possible!
Fundamental principle
for thinkers at this conference

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

5. I assert: our paradigm of patient is broken, and
it’s holding back progress

6. Our challenge in these three days:
Can we figure out
where the mistake is
and see a new way forward?

7. What if a new generation
of “super-patients”
is already succeeding
in diagnosis
and sometimes even inventing
new treatments??

8. 2007: My “Incidental Finding”
Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder
will be fine …
but there's
something
in your lung”

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

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

11. My patient peers told me:
• Welcome to the club nobody wants to join.
We know what it’s like.
• 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

12. My patient peers told me:
• Welcome to the club nobody wants to join.
We know what it’s like.
• 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

13. Surgery & Interleukin worked – in six months

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

17. Answer:
Knowledge is power,
and access has changed forever

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

19. Social media: “information capillaries”

21. Some innovator
patients are
already doing this.
They are really “engaged”

22. Meet the
Superpatients
Patients who
extend science
when all other
options are gone

23. Superpatient:
@DanaMLewis
with @ScottLeibrand
and the whole
#OpenAPS #DIYPS #NightScout
crowd

24. Superpatient:
@DanaMLewis
with @ScottLeibrand
and the whole
#OpenAPS #DIYPS #NightScout
crowd

25. #DIYPS #WeAreNotWaiting
(“Do-it-yourself Pancreas System”)

26. Better control than a working pancreas

27. Superpatients:
Kristina Sheridan
and daughter Kate

28. Kate Sheridan – nasty Lyme case
•30 doctors
•15 diagnoses
•From
star student
to unable
to read
a single page

30. Kate’s view – at Oxford now
“There are many patients
out there who have far
crazier stories …
but who do not have the
tools to share them.
I am asking you
to help us change that.”

31. Superpatient:
@Doug_Lind_Say

32. Meet Kim Goodsell

33. These true stories demand
a new paradigm of patient,
or we will be planning from an
obsolete model of reality

34. But how is this possible??
They don’t have the
education!

35. But they have motivation,
and focus,
and now they have
access to knowledge
(which is empowering)

36. It is a profound shift
in who has
information that matters.

37. A Copernican
shift.

39. Empowerment
“An empowering approach to
participation treats poor people
as co-producers
with authority and control
over decisions and resources
devolved to the lowest
appropriate level.”

40. Empowerment
“An empowering approach to
participation treats patients
as co-producers
with authority and control
over decisions and resources
devolved to the lowest
appropriate level.”

41. THAT
is a paradigm change
for patient experience,
empowerment,
and engagement.

42. “A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
Max Planck Nobel Prize, 1918
“A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
“A new scientific truth
does not triumph
by convincing its opponents
and making them see the light,
but rather because
its opponents eventually die,
and a new generation grows up
that is familiar with it.”

43. You come to conferences
so you will be a leader,
not a dinosaur
waiting to die.

44. Dave deBronkart
Twitter: @ePatientDave
dave@epatientdave.com
Patient Experience,
Empowerment, Engagement: A
Business Leader’s View