Most Crohn’s and Liver Disease Info on TikTok Is Accurate: Studies
May 16, 2023 – TikTok can be entertaining, controversial, educational, or all three at once – depending on your point of view about the social media platform. For some of Generation Z, it also serves as search engine and a major source of news and health information.
Fun, sure, but factual? How does TikTok stack up on health information? Medical experts watched thousands of posts in two research projects to find out, specifically videos on 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. All were posted since January 2021. They found of the 25% that were educational, 80% were accurate.
That surprised researchers.
“That was that high. We were expecting lower numbers,” said Tripti Nagar, MD, lead study investigator and chief medical resident at Wayne State University in Rochester, MI.
From a doctor’s point of view, “I feel like we’re a little bit biased in thinking that the information out there is inaccurate or skewed in some way.”
“We picked TikTok because it’s the most rapidly booming one, especially for the younger age group right now. So it seems the most relevant,” Nagar said at Digestive Disease Week (DDW) 2023, an international conference for gastroenterologists held 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 Funny about Crohn’s Disease?
One goal of the study was to figure out how much educational content on Crohn’s, a form of inflammatory bowel disease, was on the platform vs. lifestyle, comedy, and other subjects.
The reviewers found a wide range of information about Crohn’s disease, including diet modifications, managing a rash, and living with a stoma. And yes, some people used comedy to make light of living with Crohn’s disease.
“They were poking fun at themselves or what it’s 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. Their videos had more than 1.4 million views.
The most easily available and shared content was posted by influencers with limited health care knowledge beyond personal experience, the researcher noted.
The experts rated the videos based on how easy they were to understand and if they contained “actionable content” using a verified measure called the Patient Educational Materials Assessment Tool, or PEMAT. Results showed 91% were understandable and 11% suggested actions people with Crohn’s disease could take.
Minority Representation
There was a “decent amount of minority representation,” or almost 8% of videos, Nagar said. “That’s still low in comparison to like what we would ideally like to see.”
Even so, she would be more likely “to see someone who looks like me” on TikTok than on a traditional medical website, she said.
“I’m not saying there’s anything wrong with that, but when you’re going through something personal like Crohn’s, it does have an impact,” she continued. “It’s about representation – so you connect to it 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 rising for people with inflammatory bowel disease, compared to 6 years earlier.
“The social support is very important because in your day-to-day life, you don’t necessarily know people struggling with this,” Nagar said. Having Crohn’s disease might make some teenagers feel “like the odd one out.”
Watching other people their age navigate Crohn’s disease “can definitely be life-changing for them,” Nagar said. They learn, “OK, this is what it’s going to be like to live with this.”
Health care professionals could consider TikTok a platform for education.
“We can really tap into this to provide not only education, but social support for a very isolating diagnosis, especially at a young age.” She suggested doctors “always be open and available for those kinds of questions.”
“Honestly, I think it’s pretty reliable information from what we found. I’m not opposed to telling my patients to use TikTok as a resource. But I would caution them that if they see something that they are seriously considering incorporating into their day-to-day life, then speak with their doctor.”
A Look at Liver Disease
Nagar was unaware another researcher was presenting a study about GI information on TikTok at the same conference, until a helpful reporter let her 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 Oct. 1, 2021, to Nov. 25, 2022. He checked for misinformation because of controversies on fad diets, “liver detox” drinks, and herbal remedies.
“Liver disease is a really complex topic. I was curious if TikTok, from a social media platform standpoint, would have information on such a difficult-to-grasp topic … and if that information was accurate or not,” he said.
Loveland found 1,340, or 60%, of the videos had accurate information.
Just as Nagar was surprised that 80% of the Crohn’s educational posts were accurate, Loveland did not expect that only 60% of the liver disease videos were accurate.
“That was pretty shocking,” he said.
He noted 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, American College of Gastroenterology, and American Gastroenterological Association.
Views only count how many people look at a post. Loveland included the number of likes, comments, and shares to gauge how much someone interacted with the content.
The more popular posts tended to contain the most accurate information. Videos that were factually correct got a mean 120,737 views, compared to 53,316 views for posts considered misinformation.
The same trend was seen regarding likes. Accurate posts had a mean 14,463 likes, compared to 1,671 likes for posts containing misinformation. Accurate posts also had a mean 271 comments, compared to only 42 for misinformation-related posts.
Share numbers were similar – a mean 365 shares of accurate posts, compared to 141 shares of posts with misinformation.
People on TikTok discussed how they developed liver disease, which for some was alcohol, and for others was nonalcoholic fatty liver disease (NAFLD) or nonalcoholic steatohepatitis (NASH).
Loveland said that reviewing all the videos was “incredible” because he normally only sees people with liver disease in the hospital. So the research was educational for him, too.
“Seeing them day-to-day outside the hospital, 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, he said.
“At the same time, there’s some caution advised 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 on there, because it’s really valuable for them to be able to interact with other people with the same disease.”
