A natural experiment on the use of social media has shown how the power of social media and the limited scientific knowledge of the population at large can impact research, and not necessarily in a good way.
The story begins in 2008 when Dr. Paulo Zamboni, an Italian surgeon, suggested that multiple sclerosis was not an autoimmune disease but rather a vascular disease caused by blockages in the brain. He proposed unblocking the veins by mechanically widening them — what he calls the “liberation procedure.”
His hypothesis gathered little public attention, except in Canada, where more than 500 Facebook pages, groups or events devoted to the theory have been created with tens of thousands of followers.
A poll shows more than half of Canadians are familiar with the theory. Stories about it have appeared in the media almost weekly since The Globe and Mail, a national newspaper, wrote about it in November 2009, and it was featured on the CTV public affairs program “W5.”
Researchers note the reports have sparked a national debate about whether publicly funded trials should be conducted and whether MS patients should have immediate, publicly funded access to the vein-widening treatment known as venoplasty.
The problem with this outcry is that Canadian physicians and researchers do not advocate the approach. And, in fact, several studies have failed to replicate Zamboni’s original findings.
Nevertheless, there is widespread demand in Canada for clinical trials. A discussion of the controvery is provided in a study published in the journal Nature.
“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,” the authors said.
Experts believe the new social media environment calls for researchers and clinicians to more actively engage with the public, articulating the importance of science in determining the benefits and harm of novel treatments – and to ensure that patients’ concerns and priorities are heard.
The viral spread of information by social media calls makes it even more important to improve the knowledge level or scientific literacy of the general population.
“When patient groups are using social media to advocate and mobilize, scientists must employ similarly effective tools to communicate,” the authors said.
Source: St. Michael’s Hospital