Technology gives us lots of information in many forms, and has made it easier than ever to access scientific information. The rise of online communities has many benefits, but it can cause some problems too.
Alessandra Dillenburg, a PhD student at the University of Edinburgh, talks us through what can go wrong when media reporting on science doesn’t match up to the science itself. Alessandra will focus on one example of how media coverage after the publication of an early study led to hope for a cure that, sadly, was not founded on good evidence.
CCSVI – a new treatment for MS?
CCSVI (chronic cerebrospinal venous insufficiency) is a term used to describe the narrowing of veins in the neck. A study published in 2009 was the first to suggest that CCSVI contributes to the damage seen in MS.
The researchers suggested that the reduced blood flow seen in CCSVI could cause blood to leak into the surrounding tissue, causing a build-up of iron deposits in the central nervous system (CNS). It was thought that this could trigger the immune system to cause the damage seen in MS. But this has since been overwhelmingly challenged, and further research has shown that treatment for CCSVI isn’t effective for people with MS.
This early study into CCSVI didn’t take into account a lot of factors that could have affected the results. In science, evidence must be carefully gathered, have appropriate controls, and account for variables that could affect the results. This makes sure that the results we see are accurate and not biased.
CCSVI and the media
Many scientists and doctors were aware of the limitations of the first CCSVI study and urged caution about CCSVI treatment for MS, calling for further research.
But most of the media failed to present a balanced perspective on CCSVI. And as the media are often the main source of scientific information for the public, this can cause a divide between cautious physicians and hopeful patients.
Unfortunately, stories claiming that treatment for CCSVI was a ‘miracle cure’ for MS began to circulate in the news and on social media websites.
One particular study looked at videos about CCSVI treatment posted to YouTube by patients and health care professionals. Overwhelmingly, they found that a positive message about the new treatment was being presented in these videos, despite the lack of clear scientific evidence to show whether it really was effective.
Bringing science direct to you
This miscommunication of research can be incredibly frustrating for scientists, especially when you see your work being distilled down to one ‘catch phrase’ that is not totally accurate.
Given the lack of balanced or negative perspectives, the authors of the YouTube study suggested that researchers should reach out to the public through social media, to accurately describe the evidence for treatments.
An increasing number of researchers are getting involved in public engagement and outreach activities. I find it so rewarding to meet people who are directly affected by my research – and I know my lab mates agree.
My goal has always been to accurately explain the work we’re doing to find out more about MS. We always try to do this in a way that’s easy to understand and optimistic about the future of our research, but still honest about its limitations.
It’s been amazing to see and participate in all the outreach activities on offer - from public lectures, to Twitter accounts, to fun educational board games. If you live near a university or research institute, reach out to them and see what events they’ve got going on – we are always happy to see a big turnout!
> Read more about how to assess scientific evidence and look behind the headlines on Alessandra’s first blog: Science in the media: assessing the evidence