Social media is full of health advice, but not all of it is reliable. MYKE BARTLETT takes a look at how we can sort the facts from the fake news.
TikTok has a lot to answer for. The global shortage of diabetes treatment Ozempic followed a viral bout of promotion on the video sharing platform. TikTok videos using the #ozempic hashtag were racking up 600 million views, promising weight loss success, even for those whose attempts at dieting had previously been unsuccessful.
Soon the drug was being touted by celebs the world over as everyone from Top Gear alumnus Jeremy Clarkson to Twitter CEO Elon Musk bought up supplies — and, of course, made it almost impossible for people living with diabetes to fill their prescriptions.
While Ozempic is known to be highly effective for weight loss, and backed by extensive research, these supply issues show how influential social media has become when it comes to making decisions about our health.
This can be a problem when it comes to medical advice that doesn’t come backed by the same sort of evidence. Our information age means that it can be increasingly difficult to sort the fact from the fad and the cure from the con. That confusion can put people’s health — and even their lives — at risk.
The health dangers of misinformation
Australian academic Professor Andrea Carson specialises in studying how inaccurate information and fake news spreads via social media. Andrea says the COVID-19 pandemic brought home how dangerous these lies can be for ordinary people.
“One of the things that came out of COVID was a recognition that both mis- and disinformation can cause real world harm,” Andrea says.
“Whether it’s transmitted haplessly between family and friends or as part of a campaign to cause disruption, both can cause real world harmful effects. In the health space, COVID illuminated that with some of the fake remedies and causes that were circulating.”
One American study suggests at least 800 people died around the world because of COVID-related misinformation spread on social media, with at least 5,800 hospitalised.
Andrea points to the hundreds of hospitalisations and deaths that occurred in Iran after misinformation spread about the curative powers of extra-strength alcohol. Other cures recommended around the world included saltwater, cow urine and, most famously, a worming agent and an anti-malaria drug (the latter two were famously promoted on Twitter by President Donald Trump, despite research quickly finding them to be ineffective treatments).
One American study suggests at least 800 people died around the world because of COVID-related misinformation spread on social media, with at least 5,800 hospitalised. These included cases of people developing complete blindness after consuming methanol or becoming fatally ill after ingesting things like surface disinfectants and alcohol-based hand sanitiser. This surge in misinformation led to social media platforms such as Facebook taking action against health advice that had been proven to be dangerous or inaccurate, by either flagging it as inaccurate or removing it from their sites.
The lure of fake news
Social media is a particular problem when it comes to the spread of health misinformation, Andrea says, because it thrives on novelty and emotion, particularly outrage. The paradox is that the more unbelievable fake news is, the quicker it tends to spread. In other words, the more shocking and surprising we find something, the more likely we are to pass it on to someone else.
“News, by definition, is something that’s new. Fake news is even better than that, because it’s so sensational and often has pretty primal emotional responses embedded in it.”
Fake news has been around as long as there has been news, but what has changed is the global reach allowed by the internet. Anyone can easily share false information with anyone else, anywhere in the world. This, Andrea says, it what makes the modern brand so harmful, particularly when it comes to information about health.
Some people are more susceptible to fake news than others. People who belong to a particular group are more likely to share false information that supports the values or ideas of that group, even if they don’t necessarily believe it. A 2022 study found that people who identified as being conservative were more likely to share false information about COVID.
There is a risk for people who don’t know how to find reliable sources among the tsunami of information that the internet brings.
But there is also a risk for people who don’t know how to find reliable sources among the tsunami of information that the internet brings. This is particularly the case for people who may not have received adequate health care support in the past and who, as a result, may easily feel lost or overwhelmed.
It doesn’t help that the algorithms that decide what we do and don’t see on social media sites – and can reaffirm our biases – are often invisible. One way to stem the tide of false information is to help people improve their digital literacy — this means, to help them recognise evidence-based information when they see it.
This literacy is bolstered by fact-checking organisations such as RMIT Fact Check and Newsguard, which can help identify fake news and suspect sources. Organisations such as Diabetes WA can also help empower people to find reliable advice and ideas for health management that might work for them.
Some medical experts are taking a proactive approach to medical misinformaton — and going to meet the hoaxers where they live.
British surgeon Dr Karan Rajan has become a social media phenomenon — with more than 5.2 million TikTok followers and 662 thousand Instagram fans — and the go-to expert for a generation that has grown up overwhelmed by online health advice.
He told the Telegraph that he sees himself as “a sheriff in the Wild West of social media” and that his followers are the “deputies who go out there and tackle the bad guys” on his behalf.
Certainly, Karan has been very successful in improving digital literacy when it comes to medical advice and has debunked a lot of longstanding myths (everything from hayfever cures to fixes for cellulite). Social media gives him a reach that he couldn’t dream of in his day job, where he would see no more than 15 people a day.
Larger scale fixes tend to focus on either introducing new laws that punish those who spread fake news or improving regulation to encourage platforms to be more responsible.
Karan is only one of many medical experts attempting to tackle the lawless world of medical TikTok. (It’s worth noting that US doctors aren’t bound by the same rules when it comes to endorsing unproven therapies.) But, while improving digital literacy is great, these firefighting efforts will always struggle to deal with the larger problem of widespread misinformation.
Andrea says larger scale fixes tend to focus on either introducing new laws that punish those who spread fake news or improving regulation to encourage platforms to be more responsible. A new bill put forward by the Albanese Federal Government takes the latter approach, replacing a voluntary code (which meant that platforms such as Facebook could choose if they wanted to be bound by its rules) with compulsory regulation.
“It provides a bit more stick to back up the carrot for getting digital platforms to take seriously myths and disinformation that are on their services,” Andrea says.
This new regulation will be overseen by the Australian Communication Media Authority (ACMA), who will be able to check whether platforms are following the rules, but won’t be able to dictate what content can or can’t be published.
Finding a balance
Andrea says this kind of regulation is preferable to bringing in anti-fake news laws, as those sort of laws tend to be favoured by countries and governments that are less democratic than Australia. When governments decide what is or isn’t fake news, democracy often suffers.
So what would happen, under the new bill, if a TikTok quack starts spreading false and dangerous information about a new way to manage diabetes? In short, TikTok would be responsible for taking it down.
“Individual pieces of mis- or disinformation are not designed to be controlled by this change to the legislation,” Andrea says. “But if there were complaints going through that TikTok wasn’t dealing with disinformation on its platform, that’s when ACMA would be triggered into action.”
If ACMA found they weren’t doing this, hefty fines (up to 5% of a platform’s global profit) could be applied. This new legislation mirrors similar approaches taken by the EU. There are, Andrea says, echoes of the early days of news publishing, when there were no regulations about what papers could or couldn’t publish, leading to all sorts of nonsense gracing the front page.
Emerging therapies and treatments are often discussed within online communities long before they become widely known among health professionals.
Social media is still in its infancy. Given time, platforms such as TikTok might become less of a Wild West environment and more of a reliable source of information.
From a health perspective, it’s also important to note that social media has allowed people living with conditions such as diabetes to form new communities and discuss approaches to management that might work for them. Emerging therapies and treatments are often discussed within these communities long before they become widely known among health professionals.
While there is no will to stamp out innovative or helpful approaches to diabetes management — although it’s always worth consulting a health professional before making any changes — there is a difference between researching new therapies and spruiking disproven treatments.
Health professionals – and organisations such as Diabetes WA – can play a key role in helping people weed out hoaxes and discover new ideas that might work for them.
Andrea says all of us can help stem the tide of misinformation.
“Unless everyone takes some role in trying to deal with it, it’s never going to be solved. I would encourage people not to just share things without investigating them first. Make sure you have a think about whether you trust the source of it. If you know something to be dodgy, think about reporting it.”
Deborah Schofield, General Manager of Health for Diabetes WA says:
“It’s OK to be curious and to question things you don’t understand about your health or have legitimate concerns about – we encourage this when facilitating education programs and other interactions with people.
“After all, diabetes is a complex condition with many daily decisions to make and we love to build confidence in people’s own ability to self-manage. An important skill to develop is knowing how to access reliable information sources and being able to identify when a health claim is just too good to be true!”