May 16, 2023 – TikTok could be entertaining, controversial, educational or all three, depending in your attitude toward the social media platform. For some Gen Z, it also serves as a search engine and a very important source of stories and health information.
Fun, protected, but factual? How does TikTok rank in the realm of health information? Medical experts have examined 1000’s of posts in two research projects to seek out out, especially videos about Crohn's disease and liver diseases akin to cirrhosis.
In one study, three residents reviewed 81 TikTok videos they identified by looking for #crohnsdisease, all posted since January 2021. They found that of the 25% that were educational, 80% were accurate.
This surprised the researchers.
“It was so high. We expected lower numbers,” said Tripti Nagar, MD, lead study researcher and chief resident at Wayne State University in Rochester, MI.
From a health care provider's perspective, I feel like we’re a little bit biased if we predict the data available is inaccurate or distorted in any way.”
“We selected TikTok since it is booming the fastest, especially for the younger age group immediately, so it appears to be probably the most relevant,” Nagar said at Digestive Disease Week (DDW) 2023, an international conference for gastroenterologists being held virtually and in Chicago.
The focus was on posts from individuals and excluded TikTok videos from hospitals, health authorities or pharmaceutical companies.
What's funny about Crohn's disease?
One aim of the study was to find out how much educational content about Crohn’s disease, a form of inflammatory bowel diseaseThe platform focused on lifestyle, comedy and other topics.
Reviewers found a wide range of information about Crohn's disease, including dietary changes, treating a rash, and living with an ostomy. And yes, some people used humor to make light of living with Crohn's disease.
“They made fun of themselves or what it was like to live with the disease,” Nagar said.
The influence of influencers
About two-thirds of the videos in the study, 55 in particular, were posted by TikTok influencers or people with 10,000 or more followers. Their videos had more than 1.4 million views.
The most easily accessible and shared content was posted by influencers who had limited healthcare knowledge beyond personal experience, the researcher found.
The experts evaluated the videos based on their understandability and “actionable content” using a verified rating system called the Patient Educational Materials Assessment Tool (PEMAT). The results showed that 91% of the videos were understandable and 11% contained recommendations for action for Crohn's disease patients.
Representation of minorities
There is a “decent amount of minority representation,” namely almost 8% of the videos, said Nagar. “That's still little in comparison with what we’d ideally wish to see.”
Still, she said she's more likely to see “someone who looks like me” on TikTok than on a traditional medical website.
“I'm not saying there's anything fallacious with that, but whenever you undergo something personal like Crohn's disease, it has an impact,” she continued. “It's about representation — making you’re feeling more connected to it.”
An online social support group
TikTok also serves as a social support to connect people with an IBD diagnosis. In a March 2023 survey, rates of Anxiety and depression increased for people with inflammatory bowel disease compared to 6 years previously.
“Social support may be very essential because in on a regular basis life you don't necessarily know people who find themselves fighting it,” said Nagar. Some teenagers feel “like outsiders” because of their Crohn's disease.
Watching other people their age deal with Crohn's disease “can definitely change their lives,” Nagar said. They learn, “OK, that is what it's going to be wish to live with it.”
Healthcare professionals could view TikTok as an educational platform.
“We can really use this to supply not only education but in addition social support for a really isolating diagnosis, especially at a young age.” She suggested that doctors “should all the time be open and available to reply questions like this.”
“Honestly, I feel what we've found is pretty reliable information. I don't mind telling my patients to make use of TikTok as a resource. But I might caution them that in the event that they see something they're seriously considering incorporating into their every day routine, they need to consult with their 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 alerted her to it. Macklin Loveland, MD, an internal medicine resident at the University of Arizona in Tucson, also didn't know about Nagar's TikTok study on Crohn's disease.
Loveland was the sole reviewer of the 2,223 TikTok posts in his study. He looked for videos on the topics “liver cirrhosis” and “liver disease” posted between October 1, 2021, and November 25, 2022. He looked for misinformation due to controversies surrounding fad diets, “liver detox” drinks and herbal remedies.
“Liver disease is a very complex topic. I used to be curious, from a social media platform perspective, whether TikTok would have information on such a difficult-to-understand topic… and whether or not that information is accurate,” he said.
Loveland found that 1,340, or 60%, of the videos contained accurate information.
Nagar was surprised that 80% of the Crohn's disease education videos were true, and Loveland did not expect that only 60% of the liver disease videos were true.
“It was pretty shocking,” he said.
He noted how many views, likes, comments and shares each post generated, and 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 view a post. Loveland considered the number of likes, comments and shares to measure how much someone interacted with the content.
The more popular posts tended to contain the most accurate information. Videos that were factually correct were viewed an average of 120,737 times, compared to 53,316 times for posts that were considered misinformation.
The same trend was seen in likes. Accurate posts received an average of 14,463 likes, compared to 1,671 likes for posts containing misinformation. Accurate posts received an average of 271 comments, compared to just 42 for posts containing misinformation.
The number of posts shared was similar – on average, correct posts were shared 365 times, compared to 141 times posts containing misinformation.
On TikTok, people discussed how they developed liver disease, some due to alcohol, others due to nonalcoholic fatty liver disease (NAFLD) or nonalcoholic steatohepatitis (NASH).
Loveland said it was “incredible” to watch all the videos because he usually only sees people with liver disease in the hospital, so the research was educational for him, too.
“Seeing them day in and time out of the hospital, what they're going through. I assumed that was a very cool learning tool.” The TikTok posts really show liver disease from a humanistic perspective, he said.
“At the same time, a certain degree of caution is required, because not everything out there [on TikTok] is true,” Loveland said. “I don't want to give up completely or tell patients not to go, because it's really valuable for them to be able to interact with other people with the same disease.”