A new study from Ohio State University found that the majority of TikTok content with information about gynecologic cancer was false or inaccurate.
The majority of gynecologic cancer content on the video sharing app TikTok is misleading or of poor educational quality and could be detrimental to women seeking health information, a new study published in the journal Gynecologic Oncology found.1
TikTok was launched in 2017 and has rapidly become one of the most popular social media sites in the world, with 1.7 billion users as of March 2023.2 The platform has been widely criticized for the amount of misinformation found in videos posted by creators. One investigation found that nearly 20% of content on the app contained false or misleading claims.3
Investigators from Ohio State University’s Arthur G. James Cancer Hospital and Richard J. Solove Research Institute conducted a study to examine themes, quality, and reliability of gynecologic cancer-related content on TikTok.
“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,” Laura Chambers, senior author on the study, said in a release.4 “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.”
The team of researchers searched TikTok for the 500 most popular posts and top 5 hashtags on ovarian cancer, endometrial cancer, cervical cancer, vulvar cancer, and gestational trophoblastic disease in August 2022. Data on demographic information, message tone, and thematic topics was also collected.
A modified DISCERN scale was used to rate the educational videos for quality and reliability. The DISCERN scale is an instrument that enables patients and information providers to “judge the quality of written information about treatment chocies.”5
In total, the search found that the top 5 hashtags for each type of cancer had over 466 million views. Of the top 500 videos, 430 met inclusion criteria for the study. There were 11 central themes across videos, including cancer experience, diagnosis symptoms, and education. The majority of creators were White, at 7.7%, followed by Black at 4.6%, Asian/Pacific islander at 2.3%, and Hispanic at 5.5%.
Investigators found that 73% of content was inaccurate. The median post DISCERN score was 1, which indicates poor educational quality and reliability. Asian/Pacific islander posters received the highest scores, followed by Black, Hispanic, and White posters, respectively.
“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 Chambers. “And what can we do, as a broader community, to provide quality health information and support services to patients seeking information about gynecologic cancers?”