The CRA Annual Conference is known for providing a blend of scientific and special interest sessions. This year was no different with an exciting symposium on technology in healthcare, which included live demos of telehealth and mobile platforms that will innovate rheumatology practice. It also included a compelling talk on the place for social media in healthcare, given by Dr. Eric Benchimol.
One of the arguments for physician involvement came from Nature. An Italian researcher hypothesized an unconventional procedure, venoplasty, for the treatment of MS. Although it was not advocated by other researchers, in Canada over 500 Facebook groups promoted the vein-widening therapy. The story was picked up by news programmes, leading to widespread patient advocacy and protests. This placed unprecedented pressure on politicians to alter research priorities. Despite conclusions from the CIHR on the absence of evidence, patients travelled to other countries to receive this procedure, and sadly at least two deaths were reported.
The clear lesson is that in an era of viral patient mobilization via social media, scientists must use similar tools to achieve effective communication.
Reference: Chafe R. et al., The Rise of People Power. Nature. 2011:472;410-1.