A new study argues that social media and the Internet are so influential that they’re setting national research priorities. The study, by a group of Canadian doctors, was published today in Nature.
Multiple sclerosis is a devastating illness that, experts widely agree, is an autoimmune disease. But in 2008, Italian surgeon Paolo Zamboni submitted that MS was not an autoimmune disease but rather a vascular disease. “Brain blockages” were the real culprit behind MS, he argued, and symptoms could be alleviated by something he called a “liberation procedure”–the physical, mechanical widening of veins in the brain, known more technically as venoplasty.
Globally, among experts, this thesis was met with the round rejection it evidently deserved. Except in one place: Canada. A pair of mainstream media misjudgments apparently launched the craze: The Globe and Mail penned an article in late 2009, and then CTV followed with a segment on the treatment. But after those missteps, the Internet took over. YouTube, Twitter, and Facebook have become a social echo chamber among patient-advocacy groups demanding access to the unproven treatment. There are over 500 Facebook pages (including groups and events) dedicated to promoting the Zamboni procedure. Half of all Canadians know of the theory, according to one poll; articles appear weekly; tens of thousands have joined the ranks of the procedure’s supporters on the web. A national
debate rages on about whether publicly funded trials should be conducted and
whether MS patients should have immediate, publicly funded access to venoplasty. All for an unproven treatment that has been rejected by the scientific community.
“New tools such as Facebook and Youtube make it considerably more likely that patients learn about such therapies, without necessarily learning about their potential limitations,” write the Nature study authors, researchers at Memorial University in St. Johns, Newfoundland, and St. Michael’s Hospital in Toronto. The findings join others showing the outsize influence of sites like Twitter on weighty issues like national politics.
Scientists are often loathe to communicate their work; there is an inherent assumption that the truth will win out, and will have enough weight to eventually sway converts. (If only pure evidence were enough to win over the Obama “birthers.”) In fact, though, it’s time for scientists, researchers, and doctors, to fight PR with PR. Truth needs a media-relations team, too, especially in the current environment. “When patient groups are using social media to advocate and mobilize, scientists must employ similarly effective tools to communicate,” conclude the study authors, pointing out that today’s public is “no longer deferential to experts.”
The press release today announcing the study ends intriguingly. Following the boilerplate nugget about the entity putting out the release, St. Michael’s Hospital, there’s this little note: “Follow us on Twitter: https://twitter.com/stmikeshospital.”