This is @AnnFuller's presentation from the May 7, 2012 Third Tuesday Ottawa event. She graciously agreed to share the presentation with the group.

1. @AnnFuller

2. What is Social Media?
• Communications tool
• Extension of every day interaction
• Conversations & exchange
• Communities of shared interest
• Integrates technology

3. Healthcare context
• 70% of CDN Internet users search for
health info (StatsCan, 2009)
• 400,000 frequently updated healthcare
blogs
• 1,200+ US hospitals are using it
• 260* Canadian hospitals

4. The healthcare context

5. Why care?
• With the right precautions, we can
help make a difference in the lives
of our patients by spreading our
expertise outside our walls and
beyond the patients we can see in
our clinics each year

6. Why care?

7. Why care?
Drummond report
Current State Reformed State
Intervention after problem Health prevention
Hospital-centric Patient-centric
Fee-for-service funding Blend of salary/fee for service
Blend of base, by activity, by
Cost +inflation financing outcomes
Info conveyed in docs’ Use of Internet, other more
offices “available”

8. Why care?

9. Networks for Hospitals
Applications of Social
With General Public
• “Attract” patients
• Hospital info & updates
• Fundraising
• Community engagement
• Health education

12. Flickr, Elgin

13. Networks for Hospitals
Applications of Social
For Hospital Purposes
• Staff engagement
• Team building
• Workplace collaboration
• Project communications
• Recruiting

14. Networks for Hospitals
Applications of Social
Research & Academic Mandate
• Knowledge exchange & crowdsource
• Teaching tool
• Raise visibility for experts/expertise
• Clinical trial recruitment

15. #hcsmca

16. The importance of Social Media in Medicine
Dr. Scott Strayer, Univ of Virginia Health System
http://www.youtube.com/watch?v=T0w9yIc76zo

20. Average time between
discovery of medical
innovation and
widespread adoption?

21. Networks for Hospitals
Applications of Social
Patient Care & Support
• Anti stigma
• Patient & family support groups
• Clinical diagnosis
• Patient care

33. Flickr, USHR FD

35. Zamboni proposed that obstructions in
E. KAISER; EDMONTONJOURNAL.COM
veins lead to a build-up of iron deposits in
the central nervous system, which triggers
an autoimmune response1. In a non-rand-
omized, non-blinded study of 65 patients, he
found that those with the relapsing remit-
ting form of the disease had fewer relapses
after venoplasty. Patients with progressive
forms of MS showed little improvement2.
On the basis of these findings, Zamboni has
called for randomized trials to assess the
effects of venoplasty more rigorously.
Most neurologists and other physicians
who treat patients with MS say that a non-
randomized, non-blinded trial is poor evi-
dence that venoplasty is beneficial, especially
given the variable nature of some forms of
the disease. Moreover, several studies3,4 have
failed to replicate Zambonis original findings.
Nonetheless, in Canada, CCSVI has garnered
an extraordinary amount of attention.
In November 2009, TheG lobeand Mail
Call for ‘liberation’: a November 2010 rally in Edmonton, Canada, for a multiple-sclerosis treatment. one of the country s leading national
newspapers and the Canadian Television
Network s news programme W5, featured
The rise of stories about Zamboni and CCSVI. Both
stories described patients with MS, includ-
ing Zambonis wife, as experiencing dramatic
improvements after venoplasty. The W5
people power programme described it as a revolution-
ary treatment for a most debilitating disease
[that] could free MS patients from a lifetime
of suffering 5. Reports in the Canadian media
Calls in Canada for trials of a contentious treatment for about Zamboni and the liberation proce-
dure have appeared almost weekly since.
multiple sclerosis illustrate how social media can affect The reluctance of the Multiple Sclerosis
research priorities, say Roger Chafe and his colleagues. Society of Canada, clinicians and research-
ers to advocate for patients immediate
access to venoplasty or even for clinical
I
n 2008, Paolo Zamboni, a vascular What is fascinating here is the extraordi- trials to test its efficacy has led hundreds
surgeon from the University of Ferrara nary mobilizing power of the media and the of patients and their supporters to form
in Italy, hypothesized a new cause of Internet. More than 500 Facebook groups, advocacy organizations. These groups have
multiple sclerosis (MS). He pointed to abnor- pages and events dedicated to promoting used the Internet and social media to share
malities in the veins draining the brain and vascular treatment for MS have emerged information and testimonials about posi-
spinal cord, a condition he called chronic in less than two years and amassed tens of tive responses to the therapy, to attack the
cerebrospinal venous insufficiency (CCSVI). thousands of participants. Indeed, the case credibility of those advocating caution and
Zamboni proposed that unblocking the veins indicates the unprecedented pressures that to organize campaigns and demonstrations.
by mechanically widening them can improve politicians and funders worldwide can now Some have even accused the MS society and
the symptoms of the disease. He termed his face to alter research priorities even in the MS physicians of being swayed by conflicts
treatment the liberation procedure. absence of credible scientific evidence. of interest as when CCSVI is introduced,
Zamboni s hypothesis is a radical depar- In this new social-media environment, the number of MS patients will drop .
ture from the prevailing view that MS is researchers and clinicians need to engage Partly in response to pressure from such
mainly an autoimmune disorder. In most more actively with the public to articulate groups, Canadas largest public funder of
countries, it has received little attention. In the science validating, or debunking, novel health research, the Canadian Institutes of
Canada, however, a national debate is under treatments and to ensure that patients Health Research, in partnership with the
way about whether publicly funded clinical concerns and priorities are heard. MS society, convened an expert panel in
trials should be conducted on the treatment August last year to assess the CCSVI MS
of CCSVI, or even whether patients with H HH P S
IG O E hypothesis. The panel concluded that more
MS should have immediate, publicly funded MS is a chronic neurological disease that observational studies for instance, com-
access to a vein-widening procedure called causes a variety of symptoms including paring the frequency of abnormal venous
venoplasty. This is despite the fact that vir- weakness, loss of balance or vision, and blood flow in people with MS with that in
tually none of the country s MS physicians memory loss and can be functionally individuals who do not have the disease
and researchers, and not even the Multiple disabling. In the relapsing remitting form should be performed, but in the absence of
Sclerosis Society of Canada the nations of the disease, symptoms can improve for clear and convincing evidence for CCSVI,
largest support organization for patients months or years before worsening again. the performance of an interventional venous
have advocated for either. Currently there is no cure. angioplasty trial with its attendant risk to MS
4 10 | N A T U R E | V O L 4 7 2 | 2 8 A P R I L 2 0 11
© 201 Macmillan Publishers Limited. All rights reserved
1

36. #haiti #cholera

37. Average 18 people die each day waiting for
transplants because of the shortage of donated organs.

38. The challenges
• Impact to patients
• Liability
• Privacy
• Ethics
• Boundaries
• Time theft
• Reputation
• Compensation

39. Biddle
Birdal
Gould
Golanka

40. The challenges
• Impact to patients
• Liability
• Privacy
• Ethics
• Boundaries
• Time theft
• Reputation
• Compensation

41. Flickr, Elgin