Scientists are urging one another to get on Facebook to conduct research and communicate with the public about their work.
That’s the gist of a treatise published in Nature called “The Rise of People Power.”
“New tools such as Facebook make it considerably more likely that patients learn about therapies without necessarily learning about their potential limitations,” said the study’s authors.
The researchers cite an example where Facebook patient groups altered scientific research priorities in a way with which much of the scientific community did not agree.
In 2008, Italian surgeon Paulo Zamboni suggested that multiple sclerosis was not an autoimmune disease, but instead, a vascular disease caused by brain blockages. He went on to propose a vein-widening treatment to unblock the veins known as the “liberation procedure.”
Worldwide, the procedure and hypothesis got little fanfare. However, more than 500 Canadian Facebook pages, groups and events dedicated to the theory popped up, attracting tens of thousands of followers.
The Facebook presence sparked national debate about whether publicly funded trials should be conducted for this procedure and whether MS patients should have access to venoplasty — meaning vein widening.
The study authors noted that meanwhile, the novel MS treatment was backed by virtually none of the country’s physicians and researchers, nor the Multiple Sclerosis Society of Canada, and that several studies had not been able to replicate Zamboni’s original findings.
“The case indicates the unprecedented pressure scientists, politicians and funders worldwide can now face to alter research priorities even in the absence of credible scientific evidence,” wrote the study authors.
The Nature paper appears as a call-to-action for the scientific community, urging researchers and clinicians to engage through social media with the public, to underline the importance of science in determining the potential benefits and harms of novel treatments, and to ensure that patients’ concerns and priorities are heard.
The study authors go on to say that traditional approaches for communicating scientific findings to the public and policy advisers — including reports, briefing note, news 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,” they wrote.
Yet, the debate is not so easily won. Researchers I’ve interviewed often state that they do not have time to engage in social media and, what’s more, that their time is best spent in the labs and with the data so that more research can be completed.
We all only have a certain number of active hours in the day, and I would tend to agree with researchers who don’t want to be pressured to become vocal on social media platforms. It is actually refreshing to hear that the top concern of a scientific researcher is the research, and doing more of it, rather than informing the public of their findings and/or managing the public’s reaction.
Readers, how do you think scientists can make better use of Facebook to engage with the public about research?