One of the fascinating things about the ISSCR (International Society for Stem Cell Research) annual conference is that you learn so much about so many things, ranging from the latest in Parkinson’s research (more on that later this week) to the impact of social media on people’s knowledge about stem cells.
At a poster presentation Wednesday, Julie Robillard, Ph.D., a post doc researcher at the University of British Columbia in Vancouver, BC, talked about the way that people use Twitter to talk about stem cells.
Julie, a neuroscientist by training, became fascinated by the use of social media and has done a number of studies looking at the use of social media for topics like information about aging, gene therapy and now stem cells.
She says social media is reshaping how conversations take place between people who are interested in stem cells: anyone from a scientist to a patient to a provider of sham therapies. She says there is a lot of information out there about stem cells but the quality is not always great and in some cases it’s downright questionable.
For her poster presentation, entitled Stem Cells in Social Media: Implications for Public Policy, Julie focused on Twitter and searched for key words such as “stem cell” and “spinal cord injury.”
She said the thing that surprised her most was the sheer diversity of people that were using Twitter to communicate about stem cells: people from 41 different countries with the US, Canada, the UK and Australia the top four. She says this is clear evidence there is worldwide interest in stem cell research. The problem, however, is that the quality of many of the tweets was also widely varied. Some came from researchers and were thoughtful and trying to raise awareness about new research or important questions, but others—many others—were more interested in promoting stem cells as cures for everything from sagging skin or acne to severed spinal cords.
Julie says 15 percent of tweets came from companies involved in stem cell research. In some cases they may be companies who have results about research they are doing, but in others it was to promote a product or treatment that wasn’t necessarily approved or proven. Julie says they’re quite clever about how they do it, using hashtags (i.e. #stemcells) that suggest it came from someone’s personal account rather than a business address, but they then link back to the company site.
News reports, stories in newspapers, on the radio and TV or online are the single biggest drivers of traffic on Twitter and are a reminder of the importance of good journalism when covering these issues. A poorly written or researched story that makes inflated claims about a treatment, or fails to mention that the research was done in mice not people, can get huge play on social media and mislead many people. This is a little worrying when fewer and fewer mainstream media outlets have a dedicated science journalist on staff.
Julie cautions that when you read a tweet and don’t know the person who sent it, it’s a case of buyer-beware, don’t just accept it at face value.
She also says it’s a reminder to those of us trying to inform the public about all the progress being made with stem cell research that we need to be more engaged and more active, so that our voices can help drown out those with bad information or shoddy products to sell.