@AnnFuller's Third Tuesday Ottawa Presentation

@AnnFuller

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

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

The healthcare context

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

Why care?

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”

Why care?

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

Flickr, Elgin

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

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

#hcsmca

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

Average time betweendiscovery of medicalinnovation andwidespread adoption?

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

Flickr, USHR FD

Zamboni proposed that obstructions inE. 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-randomized, non-blinded study of 65 patients, he found that those with the relapsing remitting 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 evidence 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, including 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 procedure 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 researchers 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

#haiti #cholera

Average 18 people die each day waiting fortransplants because of the shortage of donated organs.

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

BiddleBirdalGouldGolanka

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

Flickr, Elgin

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@AnnFuller's Third Tuesday Ottawa Presentation

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