May 16, 2023: TikTok can be entertaining, controversial, educational, or all three, depending on your view of the social media platform. For some of Generation Z, it also serves as a search engine and a major source of news and health information.
Funny, sure, but real? How does TikTok compare to health information? Medical experts looked at thousands of posts on two research projects to find out, specifically videos about Crohn’s disease and liver diseases such as cirrhosis.
In one study, three medical residents reviewed 81 TikTok videos identified by a search for #crohnsdisease. They were all published since January 2021. They found that of the 25% that were educational, 80% were accurate.
That surprised the researchers.
“That was so high. We were expecting lower numbers,” said Tripti Nagar, MD, the study’s principal investigator and chief medical resident at Wayne State University in Rochester, MI.
From a physician’s point of view, “I feel like we’re a bit biased in thinking that the available information is inaccurate or biased in any way.”
“We chose TikTok because it’s the fastest growing, especially for the younger age group right now. So it seems like the most relevant thing,” Nagar said at Digestive Disease Week (DDW) 2023, an international conference for gastroenterologists taking place virtually and in Chicago.
The focus was on posts from people and excluded TikTok videos from hospitals, health care agencies or pharmaceutical companies.
What’s so funny about Crohn’s disease?
One of the goals of the study was to find out how much educational content about Crohn’s disease, a form of Inflammatory bowel diseasewas on the platform vs lifestyle, comedy and other topics.
The reviewers found a wide variety of information about Crohn’s disease, including dietary modifications, how to manage a rash, and living with a stoma. And yes, some people have used comedy to make fun of living with Crohn’s disease.
“They made fun of themselves or what it is like to live with the disease,” Nagar said.
The influence of influencers
About two-thirds of the videos in the study, 55, were posted by TikTok influencers or people with 10,000 or more followers. His videos had more than 1.4 million views.
The most readily available and shared content was posted by influencers with limited healthcare knowledge beyond personal experience, the researcher noted.
The experts rated the videos based on how easy they were to understand and whether they contained “actionable content” using a verified measure called the Patient Education Materials Assessment Tool, or PEMAT. The results showed that 91% were understandable and 11% suggested actions that people with Crohn’s disease could take.
minority representation
There was a “decent amount of minority representation,” or nearly 8% of the videos, Nagar said. “That’s still low compared to what we’d ideally like to see.”
Still, you’re more likely to “see someone who looks like me” on TikTok than on a traditional medical website, he said.
“I’m not saying there’s anything wrong with that, but when you’re going through something personal like Crohn’s disease, it has an impact,” he continued. “It’s all about representation, so you connect more.”
An online social support group
TikTok also acts as a form of social support to connect people diagnosed with IBD. In a March 2023 survey, the rates of anxiety and depression were on the rise for people with inflammatory bowel disease, compared with 6 years earlier.
“Social support is very important because in your everyday life you don’t necessarily meet people who struggle with this,” Nagar said. Having Crohn’s disease can make some teens feel “like the outsider.”
Seeing other people your age go through Crohn’s disease “can definitely be life-changing,” Nagar said. They learn, “Okay, that’s what it’s going to be like to live with this.”
Health professionals could consider TikTok as a platform for education.
“We can really take advantage of this to provide not only education, but also social support for a very isolating diagnosis, especially at a young age.” He suggested that doctors “always be open and available for those kinds of questions.”
“Honestly, I think it’s pretty reliable information from what we found. I am not opposed to telling my patients to use TikTok as a resource. But I warn you, if you see something that you are seriously considering incorporating into your daily life, then talk to your doctor.”
A look at liver disease
Nagar didn’t know that another researcher was presenting a study on GI information on TikTok at the same conference, until a helpful reporter let him know. Macklin Loveland, MD, an internal medicine resident at the University of Arizona in Tucson, was also unaware of Nagar’s TikTok study on Crohn’s disease.
Loveland was the sole reviewer of the 2,223 TikTok posts in his study. He searched for “cirrhosis” and “liver disease” videos posted from October 1, 2021 to November 25, 2022. He searched for misinformation due to controversies about fad diets, “liver detox” drinks, and herbal remedies .
“Liver disease is a really complex subject. I was curious if TikTok, from the point of view of a social media platform, would have information on such a difficult to understand topic…and whether or not that information was accurate,” he said.
Loveland found that 1,340, or 60%, of the videos had accurate information.
Just as Nagar was surprised that 80% of Crohn’s disease educational publications were accurate, Loveland did not expect that only 60% of liver disease videos were accurate.
“That was pretty shocking,” he said.
He looked at how many views, likes, comments, and shares each post generated. He judged accuracy based on guidelines from three medical societies: the American Association for the Study of Liver Disease, the American College of Gastroenterology, and the American Gastroenterological Association.
Views only count how many people look at a post. Loveland included the number of likes, comments, and shares to measure how much someone engaged with the content.
The most popular posts tended to contain the most accurate information. Videos that were actually correct got an average of 120,737 views, compared to 53,316 views for posts deemed misinformation.
The same trend was observed with respect to likes. Accurate posts had an average of 14,463 likes, compared to 1,671 likes for posts that contained misinformation. Accurate posts also had an average of 271 comments, compared to just 42 for misinformation-related posts.
Share numbers were similar: a median of 365 shares of accurate posts, compared to 141 shares of misinformation posts.
People on TikTok discussed how they developed liver disease, which for some was from alcohol and for others, nonalcoholic fatty liver disease (NAFLD) or nonalcoholic steatohepatitis (NASH).
Loveland said going through all the videos was “incredible” because he normally only sees people with liver disease in the hospital. So the research was also educational for him.
“Seeing them day by day outside the hospital, because of what they go through. I thought it was a really cool learning tool.” The TikTok posts really show liver disease from a humanistic point of view, she said.
“At the same time, some caution is advised because not everything out there [on TikTok] It’s true,” Loveland said. “I don’t want to completely give up or tell patients not to stay there, because it’s really valuable for them to be able to interact with other people with the same disease.”
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