Cancer patients looking for accurate information may not find it on TikTok.
TikTok is a handy place to get health information about just about anything if you're not worried about quality. Take gynecologic cancers for example. At least 73% of the content viewed in a recent study was inaccurate and of poor educational quality. Other studies reported similar findings.
“The vulnerability shown in social media content around personal cancer journeys is inspiring, but this data really encourages us to ask, as a medical community, how we can provide a care environment that encourages that kind of trust and real conversation with patients?" said study author Laura Chambers, DO, of the Ohio State University Comprehensive Cancer Center.
She said the study highlights the power of social media to feed misinformation that could be harmful to patient health outcomes. The study is published in the journal Gynecologic Oncology.
“The intent of this study was to understand the needs of patients that may go unspoken in the clinic but represent gaps in care that need addressed,” said Chambers. “As doctors, we are focused on treatment toxicities and patient outcomes, but many of our patients are navigating really difficult challenges at home – like figuring out how to show their child love and attention when they are going through fatiguing treatments.”
"It’s clear that more needs to be done to flag misinformation on TikTok," - Macklin Loveland, MD
About the study
For the study, researchers systematically searched for the 500 most popular TikTok posts and analyzed the top five hashtags for each related to gynecologic cancer, looking for key themes, quality of information and reliability of gynecologic cancer-related content on TikTok.
Demographic information, message tone and thematic topics were collected. Educational videos were rated for quality using an established health education information scale. As of August 2022, the top five hashtags for each gynecologic cancer had more than 466 million views.
The researchers found that, overall, the quality of the information being shared through TikTok was poor and at least 73% of content was inaccurate.
“This data inspired a lot of questions about where to go next in addressing these inaccuracies and communicating with patients directly, especially focusing on opportunities to create more diverse content to overcome racial and cultural disparities related to treatment of these cancers,” said Chambers.
Similar studies
It's not just cancer that draws patients to TikTok – and also draws concerns among health professionals. A recent study looked at diabetes information on TikTok.
Chinese researchers collected and analyzed a sample of 199 diabetes-related videos in Chinese. The overall quality of the videos was acceptable, on average, although the quality of the information varied, depending on the sources, the researchers said, according to a report from the National Institutes of Health.
The videos created by nonprofit organizations had the highest information quality, while the videos contributed by for-profit organizations had the lowest information quality, the researchers said.
Another study, this one by researchers at the University of Arizona College of Medicine, looked at TikTok posts about liver disease, the researchers found around 40 percent of videos contained medical misinformation, usually with posts pushing “fad diets,” “detox” drinks, and herbal remedies.
Led by Macklin Loveland, MD, the study’s lead author and an internal medicine resident, the researchers examined 2,223 TikTok posts tagged with the terms “cirrhosis” and “liver disease” between October and November of 2022. The researchers compared the content of the posts with evidence-based practices from leading medical organizations.
All said, 883 (around 40 percent) of the posts contained medical misinformation. Medical misinformation most often related to the efficacy of herbal products for addressing liver disease. Other unverified and false content claimed that consuming certain mushrooms, eating beef liver, or doing a parasite cleanse could heal the liver. Those claims are all inaccurate, the researchers clarified.
The good news is, the posts that contained medical misinformation didn’t tend to perform well, or at least not as well as posts that did contain correct and useful information. What the researchers termed “misleading posts” got an average of 1,671 “likes” and 140 “shares” compared to the average 14,463 “likes” and 364 “shares” for accurate posts.
“It’s clear that more needs to be done to flag misinformation on TikTok, including doctors becoming more heavily represented on the platform to combat misinformation with accurate, science-based information,” Loveland suggested. “In general, TikTok and social media platforms are great sources to disseminate health information. However, we need to put more guardrails in place against false or misleading claims.”
What should patients do?
Chambers encourages patients looking for a community of like-minded people going through similar experiences to seek out in-person and online support communities sponsored by reputable medical and patient advocacy organizations.