Barts-MS rose-tinted-odometer: ★★
One of the reasons I started blogging was to counteract misinformation and eventually disinformation about CCSVI. CCSVI which started off as a hypothesis, supported by flawed and biased initial studies (misinformation) that was rapidly spread via social media channels, which then morphed into a disinformation campaign.
The CCSVI disinformation campaign included several conspiracy theories to explain the reluctance of neurologists to accept CSSVI as the cause of MS and to refer patients for so-called ‘liberation therapy’ procedures. The latter was soon followed by unscrupulous medical practitioners who opened up treatment centres to address the so-called unmet medical need for liberation therapy. The MS scientific and medical community were taken off guard but eventually responded and performed well-designed controlled trials to show that CCSVI was not a pathological entity and was not the cause of MS. Many of these studies demonstrated that liberation therapy was ineffective and probably caused more harm than good. Over time CCSVI has faded and is now rarely spoken about or searched for online (see Google trend metrics below).
The lessons learnt from CCSVI must not be forgotten, because the parallels between CCSVI and COVID-19 vaccine-hesitancy are remarkably similar, which is why we need to act. One way is for the medical and scientific community to get out there (1) to educate the community about vaccines and how they work, (2) to debunk the conspiracy theories about the COVID-19 vaccines, (3) make themselves available to the MS community to answer questions about the vaccines, (4) to be transparent with efficacy and safety data, (5) to admit that there are data gaps in relation to people with MS and (6) to set-up studies to answer questions and create an evidence base.
It is also important not to create a ‘them and us’ conflict. People who are hesitant about having a COVID-19 vaccine have valid personal reasons for not wanting to be vaccinated. We want to understand your reasons, discuss them and see if the science and data available is able to reassure you so that you may reconsider your position on vaccination.
We at Barts-MS are planning to host an online webinar or series of webinars to answer the many questions from you in response to the post on vaccine hesitancy. Rather than using email can you please complete the following short survey and leave your questions in the open field at the end. Thank you.
If you are interested there is a great piece in this week’s BMJ on vaccine misinformation & disinformation. I suggest you read the article.
Wardle & Singerman. Too little, too late: social media companies’ failure to tackle vaccine misinformation poses a real threat. BMJ 2021; 372.
….. As the world looks to the new covid-19 vaccines with hope, there are major worries about how social media will affect uptake.
….. The major social media companies are facing wide criticism for failing to deal with vaccine misinformation on their platforms.
…. Disinformation and misinformation are not the same things. When someone deliberately creates or shares false or misleading content, and they intend to cause harm, that’s disinformation. When they do so unwittingly and don’t intend harm, it’s misinformation.
…. Before the covid-19 pandemic, social media companies had taken a hands-off approach, at least until 2016 when the Brexit referendum, along with elections in the Philippines and US, woke them up to political disinformation. And until recently they had done next to nothing to combat health misinformation. To experts, this oversight was especially worrying.
….. This laidback approach changed in 2018 when a series of measles outbreaks in the US seemed to be fuelled by vaccine misinformation. This was certainly not the first time that misinformation potentially affected a public health crisis, but because this took place in America, home of Facebook, Google, Twitter and others, it got the companies’ attention.
….. It’s only now, as pressure on the companies from governments, scientists, doctors, and the public hits breaking point, that they have changed their health misinformation policies all together. Facebook, Twitter, and YouTube all took a more assertive and expansive view of “harm.”
…. Despite this stronger stance, Facebook, Google, and Twitter are still uncomfortable accepting responsibility. They are not, they claim, “arbiters of truth,” merely middle men providing a platform to their users, the public. The companies fall back on directives from health organisations to determine what counts as false, misleading, or confusing, whether it’s international bodies like WHO or national bodies like the US Centers for Disease Control and Prevention and the NHS.
… . The decision to rely on expert organisations makes sense in principle, but in practice matters aren’t so simple. For one, scientific consensus struggles to keep pace with misinformation. Through the summer of 2020, health agencies flip flopped on guidance concerning masks and airborne transmission, while misinformation on these topics was allowed to fester.
… Unfortunately, you can’t just factcheck, label, or remove a narrative. They shape and sometimes dangerously warp how we make sense of the world. No matter how companies tackle these issues, their policies will come up short. On the one hand, even the most clearly written policies have flaws. Bad actors spreading disinformation will find loopholes, like those who posted websites that had been removed, by using new, seemingly harmless, links from the Internet.
…. As we enter 2021 and covid-19 vaccines are at last rolled out, misinformation is undoubtedly going to pose a serious barrier to uptake. The social media companies are at least showing a willingness to intervene. But people wishing to undermine trust in the vaccine won’t be using outright lies. Instead, they will be leading campaigns designed to undermine the institutions, companies, and people managing the rollout. They will be posting vaccine injury stories and providing first person videos detailing side effects that are difficult to factcheck. And, when well meaning local radio stations ask on Facebook, “Will you be getting the covid vaccine?” the comments will be flooded with conspiracy ideas and suggestions.
….. The question for the companies is whether they’re prepared to tackle this, even if such posts don’t break their current guidelines. This will sit uneasily with people who recognise that changing policies during a public health emergency could lead to a slippery slope that ends up curtailing freedom of speech. What’s required is more innovative, agile responses that go beyond the simple questions of whether to simply remove, demote, or label. We need responses that acknowledge the complexity of defining misinformation, of relying on scientific consensus, and of acknowledging the power of narratives. Unfortunately, we don’t have time to design them. So while we implore the social media companies to take a more active role, it is us, those who use social media, who need to start taking responsibility for our posting and sharing.
…. Let’s hope that, by the next pandemic, these challenges will have been tackled in ways that don’t leave us feeling as vulnerable to disinformation and misinformation as we do today.