The power of social media and the Internet can influence medical research priorities, according to a paper published in the scientific journal Nature.
A case in point is a controversial multiple sclerosis treatment and demand for clinical trials in Canada.
In 2008, Italian surgeon Paulo Zamboni came up with the theory that MS is not an autoimmune disease, as widely thought, but a vascular disease caused by vein blockages in the brain. His procedure to unblock those veins is called the “liberation procedure.”
His small study and theory got little press or attention until activist groups in Canada took to the Internet in large numbers, forming more than 500 Facebook pages, groups, and events around the liberation theory, with tens of thousands of participants.
Newspapers around the world followed the story and people with MS clamored for more information and access to the liberation procedure.
Researchers at Memorial University in St. John’s Nfld., and St. Michael’s Hospital in Toronto say that this attention spurred a national debate regarding public funding of trials and whether MS patients should have publicly funded access to the liberation procedure.
According to a press release, none of Canada’s MS physicians or researchers, or the Multiple Sclerosis Society of Canada have endorsed either idea, and several studies failed to replicate Zamboni’s results.
The paper’s authors, Dr. Roger Chafe, director of the Janeway Pediatric Research Unit; Dr. Arthur Slutsky, vice-president of research at St. Michael’s Hospital; and Dr. Andreas Laupacis, executive director of the hospital’s Li Ka Shing Knowledge Institute wrote:
“Indeed, the case indicates the unprecedented pressures scientists, politicians and funders worldwide can now face to alter research priorities even in the absence of credible scientific evidence.”
They also said that in this new social media environment, researchers and clinicians need to engage more actively with the public to articulate the importance of science in determining the benefits and harm of novel treatments — and to ensure that patients’ concerns and priorities are heard. Unconventional and unproven treatments have long been proposed and tried for many terrible diseases.
“Now tools such as Facebook and YouTube make it considerably more likely that patients learn about such therapies, without necessarily learning about their potential limitations.”
More efforts are needed to improving the scientific literary of the public, politicians and the media, the authors wrote, and to engaging a public that is no longer deferential to experts.
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