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REF NO.: 190

SUBJECT: MS therapy and the rise of people power subject of academic paper
DATE: April 27, 2011

               A national debate in Canada about whether clinical trials should be conducted on a contentious treatment for multiple sclerosis, often called the liberation procedure, shows how media and social media can affect research priorities, according to a new paper published this week in the prestigious scientific journal Nature by Dr. Roger Chafe and his colleagues.
Dr. Chafe is director of the Janeway Pediatric Research Unit, which conducts clinical and applied health research within the Discipline of Pediatrics, Faculty of Medicine of Memorial University, and in the Janeway Child Health Care Centre in St. John’s, NL.
In 2008, Paolo Zamboni, a vascular surgeon in Italy, hypothesized a new cause of multiple sclerosis (MS) involving abnormalities in the veins draining the brain and spinal cord, which he called chronic cerebrospinal venous insufficiency (CCSVI). He suggested that unblocking the veins by mechanically widening them could improve symptoms of MS. The study was small, non blinded and non randomized, but was widely publicized in Canada.
There are now hundreds of Facebook groups with tens of thousands of participants, devoted to promoting vascular treatment for MS, even though virtually none of Canada’s researchers and not even the Multiple Sclerosis Society of Canada have advocated for publicly funded clinical trials on the treatment of CCSVI.
“Unproven treatments have long been proposed, and tried, for diseases,” write the authors. “Tools such as Facebook and YouTube make it considerably more likely that patients will learn about such therapies without necessarily learning about their potential limitations.” And the power of social networks means that unprecedented pressures can be applied to politicians and research funders to expand access to procedures for which there is little scientific support.
Dr. Chafe and his colleagues found that in most countries Zamboni’s hypothesis, which is a radical departure from the prevailing view that MS is primarily an autoimmune disorder, has received little public attention.
“In Canada, however, a national debate is underway about whether publicly funded clinical trials should be conducted on the treatment of CCSVI, or even whether MS patients should have immediate, publicly funded access to a vein-widening procedure called venoplasty. This is despite the fact that virtually none of the country’s MS physicians and researchers, or even the MS Society of Canada – the nation’s largest support organization for patients – has advocated for either.”
               The reasons why the procedure has received such attention in Canada are hard to determine, but include the initial extremely positive new stories about Zamboni and CCSVI, the effective use of social media by patients and advocates, and ongoing media interest.
In this new social media environment, Dr. Chafe says researchers and clinicians need to engage more actively with the public to articulate the science validating, or debunking, novel treatments – and to ensure that patients’ concerns and priorities are heard.
The authors say that a clear lesson from the Zamboni example is that the traditional approaches for communicating scientific findings to the public and to policy advisors such as reports, briefing notes, press releases and news conferences, are insufficient. “When patient groups are using social media to advocate and mobilize, scientists must employ similarly effective tools to communicate.”
The paper concludes that in the long-term, to prevent an increasing proportion of public resources being diverted to testing what will probably turn out to be ineffective or harmful therapies, more effort needs to be devoted to improving the scientific literacy of the public, politicians and the media — and to engaging with a public that is no longer deferential to experts. This may also include the need to conduct a clinical trial of the liberation procedure, which many experts have previously resisted.
In addition to Dr. Chafe, the authors of this paper are Karen Born, Department of Health Policy, Management & Evaluation at the University of Toronto; and Arthur Slutsky and Andreas Laupacis at the Keenan Research Center at the Li Ka Shing Knowledge Institute of St. Michael’s Hospital, Toronto

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