For FutureLearn course "Social Media in Healthcare: Challenges & Opportunities" https://www.futurelearn.com/courses/social-media-in-healthcare/2

1. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Patient Empowerment
through Social Media
1

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

3. Agenda
1. Defining empowerment
2. A short version of my cancer story
3. Fundamental principles of information in
medicine today
4. How the internet has changed the flow of
information
5. Googling is a sign of an engaged patient.
Do not stop it – improve it!

4. 1. Definition:
“empowerment”
Is it real and useful,
or is it just a
“warm and fuzzy” idea?

5. 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

6. Information
empowers

7. It increases
people’s ability
to make choices
and take
effective action.

8. If you suppress information
it disempowers the
people who could use it.

9. Social media
is empowering.

10. 2.A short version
of my own cancer story

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

12. Classic
Stage IV,
Grade 4
Renal Cell
Carcinoma
Metastases
all through
the body
Median Survival:
24 weeks

13. E-Patient Activity 2:
“My doctor prescribed ACOR”
(Community of my patient peers)

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

17. 3. Fundamental
principles of
information
in medicine today

18. The most fundamental:
The best in medicine
requires
the best information
at the point of need.

19. No doctor, nurse,
or patient
can possibly contribute
to the best possible treatment
if they don’t have
the best information.

20. 1.There is far too much
for anyone to know
all the information
that could help.

21. Institute of Medicine, 2012:
700,000 medical articles/year
(2,000 per day!)

22. 2. New information
does not spread
to all professionals
instantly.
It takes years.

23. Physician adoption of new
practices years after discovery
Institute of Medicine, 2000
From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Flu vaccine, year 32:
55% doing it,
45% still not
Beta blockers, year 18:
62% doing it,
38% still not
Diabetic foot care, year 7:
20% doing it,
80% still not
Cholesterol, year 16:
65% doing it,
35% still not
Creative Commons Attribution / Share-Alike
May be distributed with this license included

24. Patients can be useful
“information hunters.”

25. 3. Not all information
in medical journals
is reliable.

26. 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

29. 4.A lot of useful
information exists
that will never be
in the literature.
It’s worth finding.

30. Online 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
None of this is in the literature, even today

31. 4.The internet has
changed the flow of
information

32. Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on
Engelen Derksen 2010 at

33. Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on
Engelen Derksen 2010 at

34. Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on
Engelen Derksen 2010 at

35. Transformation of Knowledge Access
Social media act as
“Information capillaries”
Slide by @ePatientDave 2015 based on
Engelen Derksen 2010 at

36. Transformation of Knowledge Access
Social media act as
“Information capillaries”
Slide by @ePatientDave 2015 based on
Engelen Derksen 2010 at
Closed system Open network

37. 5. Googling is a sign of
an engaged patient.
Do not stop it –
improve it!
Teach it!

38. Improve patients’ skills
as information seekers.
Nurses can be great at this.
Community health workers,
too.

39. Predictably,
the establishment,
feeling threatened,
sometimes
strikes back.

40. The Belgian government
spends taxpayer money on
Google ads saying
“Don’t google it”

41. Post on LinkedIn:
dave.pt/belgiangoogle2
The ad videos:
dave.pt/belgiangoogle3
dave.pt/belgiangoogle4

42. When reality changes,
ignoring it
can be tragic.

43. Reported June 2015

44. Reported June 2015

45. Summary
1. Empowerment: increasing people’s abilities to
make choices and act.
2. Information is empowering.
3. Social media provides “information capillaries”
4. The best care requires the best information
5. Information changes very rapidly today.
This gives medicine new challenges.
6. Googling is a sign of an engaged patient.
Don’t stop it – improve it!

46. “e-Patient Dave” deBronkart
Twitter: @ePatientDave
facebook.com/ePatientDave
LinkedIn.com/in/ePatientDave
dave@epatientdave.com
Patient Empowerment
through Social Media
46