Health (Mis) Information And Social Media (TikTok)

When viewing health information on social media platforms, you are going to find more than a fair share of misinformation. Some of this may be relatively harmless, but others can be outright dangerous like those on TikTok that encouraged people to drink borax with their morning coffee.

Unfortunately, TikTok is not the only social media platform with misinformation, and the dangerous hashtag is now spreading to Facebook, groups have appeared as the trend with no scientific backing goes viral. Borax appears to be the new TidePod trend that most people with common sense struggle to understand why someone would do. TikTok trends most often don’t last very long, soon enough something else will trend that is dangerous and misleading nonsense, and the spotlight will turn in that direction. 

It can be hard to track the impact of trends like this, said Rachel Moran, who studies health misinformation as a postdoc scholar at the University of Washington. “Especially when the trend involves ingesting a substance that is typically thought of as toxic, it’s unclear how many people who show interest online will actually perform the behavior offline,” she said. “People may be more inclined to try drinking borax if they can post about it online and go viral, but similarly the everyday non-posting user watching the video may see it as a trend fit only for (wannabe) influencers.”

“It fits the mold of what becomes popular on the platform: ‘alternative’ health advice that is cheap, accessible, and explained through a scientific-adjacent explanation that feels familiar,” said Moran, the misinformation expert.

“An interesting thing about TikTok is that the content that gets spread a lot isn’t necessarily the content that people like,” said Casey Fiesler, an associate professor at the University of Colorado who studies online communities. “It gains a foothold with both the audience who agrees with it and wants to believe it, and the audience who doesn’t believe it and knows that it’s misinformation and wants to warn people.”

“When these ‘new’ trends go viral, the conversation intensifies and then dissipates so quickly it’s hard for us to grasp how and when the information became important,” said Moran. 

Recently, Dimitroyannis, Roxbury and other UChicago researchers published a new study in which they systematically analyzed health information on TikTok to see if they could identify trends in video quality; how much misinformation is out there, and does it come from specific types of content creators? 

“Every type of ‘Tok’ exists – that’s just how the internet works,” says Rose Dimitroyannis, a third-year medical student at the University of Chicago Pritzker School of Medicine, in a media release. “Little tiny segments of the population find one another and make waves.”

According to the researchers, they found that close to half of the videos they analyzed contained non-factual information, with a large proportion of misleading videos coming from untrained non-medical influencers. The analysis may help audiences identify trustworthy information on social media platforms and offer insights to help trained medical professionals disseminate high-quality health information that could reach more people. 

“There is high-quality and factual information out there on social media platforms such as TikTok, but it may be very difficult to distinguish this from information disseminated by influencers that can actually be harmful,” said Christopher Roxbury, MD, a surgeon and rhinology expert at UChicago Medicine.

To narrow the scope of the study, the researchers focused on a specific health condition and performed their search during a 24-hour period to limit the effects of TikTok’s shifting algorithm, using specific hashtags related to sinusitis such as #sinusitis, #sinus, #sinustok, and #sinusinfection. Then they cataloged the content based on uploader types, content categories, content types, and assessed the quality of the videos using a range of metrics including understandability, actionability, and reliability being validated with empirical tools like the Patient Education Materials Assessment Tool for Audiovisual Material.

The researchers reported that 54% of the videos contained non-factual information, and videos from non-medical influencers (content creators with more than 10,000 followers who were not medical professionals) accounted for half of all videos and they were more likely to contain misinformation and have lower quality scores. Medical professionals produced education content that received overwhelmingly higher scores for video quality, factual information, and harm/benefit comparisons. Only 15% of videos from medical professionals contained non-factual information, compared to nearly 60% of videos from nonmedical influencers.

The proliferation of non-factual videos regarding medical conditions, treatments, or preventative measures on social media platforms is staggering, not only can they lead to more confusion, but they can result in detrimental health outcomes. Most alarmingly a great deal of the misinformation is genuinely dangerous, and that is not even taking into account the more subtle effects such as people not getting medical care because of using non-factual ineffective, and misleading alternatives promoted by non-medical professional social media influencers. 

“I frequently have patients in the clinic asking me questions about things they saw online or on social media, and I have found that many times the information has steered patients in the wrong direction,” said Roxbury, the study’s senior author. “In some cases, I see patients who have already sought out and undergone such treatment without any benefit; in rarer cases, they’ve been harmed.”

For instance, when analyzing the sinusitis TikToks, a trend was identified of non-medical professional influencers recommending shoving a whole clove of garlic up their noses to relieve congestion. While blowing your nose after doing so may expel more mucus, but that is because the garlic clove being shoved up there would cause irritation and increase mucus production. This trend puts gullible people at risk of damaging their nasal tissue or inhaling the garlic clove so far up their nose that it could clog their nasal passage. 

"Just to put it out there — don't put garlic in your nose,” Dimitroyannis said with a smile. "It wasn't coming from a bad place, but as many trends do, it tended to become quite unsafe."

“As a clinician, you can't deny that anyone who comes into your office has probably looked something up — which is well within their rights to try to understand their health,” said Dimitroyannis, the lead author of the recent paper. “At the end of the day, patients and physicians alike should understand the power of this tool, recognizing the downsides while acknowledging that there can be good quality information available as well.”

“Medical professionals are people; they can still say wrong things,” Dimitroyannis acknowledged. “But overall, health experts are posting more beneficial content.” 

The researchers suggest that people should critically evaluate any health information that they find online, and cross-reference the information with reliable sources and/or consult with their own trusted healthcare professionals when they are in doubt of something random they found online.

Even though non-medical professional social media influencer’s content generally had lower quality scores and contained misinformation they have greater visibility because they are more prolific on social media platforms than trained medical professionals. The researchers hope that this imbalance can be evened out with more activity from trained medical professionals offering tips using the “stitch”, “reels”, “remix” and “duet” trending features on TikTok that tend to get more attention.

“If you’re a healthcare expert with any interest in content creation, you could make a difference,” Dimitroyannis said. “Someone could see your video and get the health information they need instead of seeing something that could hurt them.”