COLUMBUS, Ohio — Scientists are urging women to seek a second opinion that’s not on social media when it comes to gynecologic cancers. Researchers at The Ohio State University Comprehensive Cancer Center – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC – James) warn cancer misinformation and incredibly inaccurate advice have become rampant across the popular platform TikTok. Even worse, estimates show that millions of women now look to TikTok as a source of health-related guidance.
Consequently, the study authors stress that healthcare providers and institutions need to urgently create more legitimate educational content and address existing gaps in care.
Senior study author Laura Chambers, DO, explains this work details the compelling power of social media to feed misinformation to countless people that could prove harmful to patient health outcomes in the real world. This study also highlights an opportunity to address existing gaps less likely to come up during a clinical appointment.
Dr. Chambers initially set out to learn more about the unspoken concerns among her patients, who are often mothers and young women. More specifically, she wanted to better understand how her patients use social media, the information they share online, and how they consume that information.
“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,” says Dr. Chambers, an osteopathic physician at the OSUCCC – James, in a media release. “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.”
(credit: Photo by Anna Shvets)
To conduct this study, the team systematically searched for the 500 most popular TikTok posts, then analyzed the top five hashtags for each related to gynecologic cancer (ovarian, endometrial, cervical, and vulvar cancers, as well as gestational trophoblastic disease) for key themes, quality of information, and reliability of gynecologic cancer-related content on TikTok.
Along the way, they also collected demographic information, message tone data, and thematic topics. Videos the team considered educational were also rated for quality using an established health education information scale. To give an idea of just how many eyes these posts can reach, as of August 2022, the top five hashtags for each gynecologic cancer boasted over 466 million views.
Study authors ultimately found that, overall, the quality of the information being shared on TikTok was quite poor, with at least 73 percent of content being inaccurate and of poor educational quality. Notably, they also report that there were racial disparities extending into this social media space.
“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,” Dr. Chambers continues.
“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? And what can we do, as a broader community, to provide quality health information and support services to patients seeking information about gynecologic cancers?”
Dr. Chambers encourages patients looking for a community of like-minded people dealing with a similar experience to avoid TikTok and instead seek out in-person or online support communities sponsored by more reputable medical and patient advocacy organizations.
The study is published in the journal Gynecologic Oncology.
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