POLITICS, SCIENCE, AND EVIDENCE: THE ROLE OF SOCIAL MEDIA IN SHAPING SCIENCE POLICY IN THE CCSVI/LIBERATION THERAPY DEBATE

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1 POLITICS, SCIENCE, AND EVIDENCE: THE ROLE OF SOCIAL MEDIA IN SHAPING SCIENCE POLICY IN THE CCSVI/LIBERATION THERAPY DEBATE Daryl Pullman, PhD Professor of Medical Ethics

2 CADTH May Guiding question: Is the Canadian experience with CCSVI exceptional (in the sense that something similar is unlikely to occur again in the near future), or is it a harbinger of things to come with regard to how citizen s (and by extension, politicians) engage directly in setting the science and health policy agenda?

3 CADTH May Multiple Sclerosis MS is a neurodegenerative disease involving inflammation and degeneration of myelin, the protective covering around nerve cells in the brain and spinal cord Common symptoms: Visual disturbance, speech problems, numbness, pain, loss of balance, loss of coordination, bladder and bowel problems, stiffness, weakness, paralysis, fatigue No consensus about the cause : Often characterized as an autoimmune disorder Other potential causes include: toxins, environmental triggers, vitamin D deficiency, infectious agents, genetics, vascular abnormalities (CCSVI)

4 CADTH May CCSVI The Zamboni Hypothesis

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6 CADTH May Nov 21, 2009 Canadian Media Response It was not your typical 90 second TV news story, but a 30-minute documentary, months in the making. The story focused on Zamboni s work and the timing of the documentary was pegged to the publication of his research in a peer reviewed journal.... A. Picard

7 Into the blogosphere CADTH May

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9 CADTH May April 6, 2010 At what point is science more important than treatment? W5 investigates, interviewing doctors who urge patients to slow down; patients who are moving ahead and seeking treatment, and presents the shocking revelation that the CCSVI treatment for MS was proposed by an Austrian doctor more than twenty years ago but his research proposals were rejected out of hand by MS experts who summarily declared there was no link between the disease and blocked or narrowed veins...

10 CADTH May The scientific/political measured response... Recommendations 1. Effective immediately, establish a scientific expert working group made up of the principal investigators of the seven MS Society-sponsored studies (four from Canada and three from the US), scientific leadership from CIHR and the MS Societies, and a Chair: Alain Beaudet representative from the provinces and territories, to monitor and analyze preliminary and final results President from CIHR these studies, as well as from related studies from around the world related to venous anatomy and MS. In the absence of clear and convincing evidence for CCSVI, the performance of an interventional venous angioplasty trial with its attendant risk to MS patients is not appropriate at this time.

11 CADTH May CIHR/MS Society Expert Panel Membership included PIs of seven studies carefully designed to examine various aspects of the CCSVI hypothesis (4 Canadian; 3 U.S.) Several sent sonographers for training in the Zamboni technique Panel functioned mainly as an oversight committee for the 7 studies in order to assess the emerging evidence with regard to the CCSVI hypothesis Solicited additional information from outside sources

12 CADTH May Various provincial responses... $700,000 (3 yrs) tracking registry $1 million (3 yrs) observational study $400,000 observational study Jan Premier Wall announces $2.2 million so Sask residents can participate in clinical trail $5 million in Albany, for clinical NY trials (Oct 2010); $5 million match from Manitoba & $250,000 from Yukon SHRF decides not to fund any projects

13 CADTH May Expert Panel Meeting June 28, 2011 Updates on 7 on-going studies Most had not yet completed enrollment Brief report on a small study of autopsies conducted on 7 MS patients that indicated possible venous abnormalities in some Systematic review of 8 previous studies

14 CADTH May Analysed 8 studies The combined results indicated an association between CCSVI & MS However, significant heterogeneity among the studies (e.g. prevalence of CCSVI in MS patients varied from 0% to 100%) suggests the performance of ultrasonography to detect CCSVI varied greatly between the studies Fox, CMAJ Commentary

15 June 29, 2011 CADTH May At yesterday's meeting, experts discussed the seven ongoing studies looking at CCSVI and linkages to MS, and reviewed scientific reports that are presently available. Based on this information, Dr. Beaudet has advised me that there is unanimous agreement that a clinical trial should proceed at the Phase I/II level.

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17 September 21, 2011 CADTH May

18 CADTH May Feb 29, 2012 A politician accuses scientists of playing politics... CIHR put a political process in place instead of a scientific process. Evidence was being willfully ignored from the literature, from scientific conferences, and from returning Canadians treated for CCSVI. Kirsty Duncan, MP

19 June 25, 2012 CADTH May

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21 November 21, 2012 CADTH May

22 Nov 22, 2012 CADTH May

23 CADTH May The ELSI tortoise and the scientific/technological hare

24 The scientific tortoise and the social media/technological hare CADTH May

25 March 2013 CADTH May

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28 CADTH May the process by which evidence is manufactured may be changing irrevocably. As the Canadian experience with CCSVI illustrates... the advent of the internet and social media mean the ivory tower of academia might be stormed at any moment by an interested, enthusiastic, and motivated public. Researchers and clinicians must learn how to utilize these resources to ensure that the message that emerges is both balanced and informed.

29 Thank you CADTH May