Deceptive Health Advice on TikTok Raises Concerns About Gynecologic Cancer Misinformation

by Richard Chau
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Since its launch in 2017, TikTok quickly rose to global prominence as one of the biggest worldwide social networks. As of February 2023, the short-form video application has more than 150 million monthly active users in the U.S. Notably, millions of women are increasingly seeking health advice from social media, with TikTok becoming one of the most popular online platforms for such information.

However, a recent study conducted by The Ohio State University Comprehensive Cancer Center (OSUCCC) – Arthur G. James Cancer Hospital and Richard J. Solove Research Institute has revealed alarming trends of misinformation. Published in the journal Gynecologic Oncology the study highlights that a significant portion of health advice related to gynecologic cancers circulating on TikTok is not only misleading but also dramatically inaccurate.

Related article: The Emergence of General AI for Medicine: Medical Applications of ChatGPT 

The Crisis of Social Media Misinformation

Senior study author, Dr. Laura Chambers, Assistant Professor in the Division of Gynecologic Oncology at Ohio State University, emphasizes the worrying implications of these findings. While social media platforms like TikTok offer a unique opportunity to address healthcare gaps that might not arise during clinical appointments, they also have the potential to perpetuate harmful misinformation that could adversely affect patient health outcomes.

Dr. Chambers was interested in learning more about the unspoken concerns of her patients, who are often mothers and young women. Specifically, she sought to understand how they were utilizing social media for health-related information. “The intent of this study was to understand the needs of patients that may go unspoken in clinical settings but represent gaps in care that need to be addressed,” says Dr. 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.”

TikTok’s Role in Disseminating Inaccurate Cancer Information

In order to assess the extent of misinformation on TikTok, the research team systematically analyzed the 500 most popular TikTok posts related to gynecologic tumors, including ovarian, endometrial, cervical, and vulvar cancers, as well as gestational trophoblastic disease (100 posts for each type of cancer). The study evaluated the top five hashtags associated with these cancers, collecting demographic information of creators, assessing message tone, and identifying thematic topics. Educational videos were also evaluated for quality and reliability using the modified DISCERN scale, a well-established tool for judging the quality of both written and online consumer health information.

The findings were highly concerning. As of August 2022, TikTok’s top five hashtags for each gynecologic cancer collectively garnered over 466 million views, signifying the significant reach of such content. However, the information disseminated in this social media space was proved to be unreliable, with a staggering 73% of content being both inaccurate and of subpar educational quality.

Addressing the Disparities and Providing Quality Information

Apart from the misinformation issue, the study also highlighted the troubling fact that racial disparities in gynecologic cancers have extended into this social media space, underscoring the need for more diverse content that takes into account different racial and cultural experiences of patients in order to reduce disparities related to treatment of these cancers.

Dr. Chambers emphasizes the importance of addressing these inaccuracies and fostering direct communication with patients. While recognizing social media platforms like TikTok as valuable avenues for individuals to share their personal cancer journeys and seek support, she also reminds the medical community and society of the public health challenge resulting from misleading and inaccurate cancer information. “How can we provide a care environment that encourages trust and real conversations with patients? What can we do to provide quality health information and support services to patients seeking information about gynecologic cancers?” asks Dr. Chambers. Moreover, as a recommendation, Dr. Chambers encourages patients to seek out reputable medical and patient advocacy organizations for reliable information and support communities. 

The above-mentioned findings were not only published but also presented in two poster presentations at the 2023 Annual Meeting for the Society of Gynecologic Oncology in Tampa, Florida, indicating the urgency of addressing the issue of misleading health advice on social media platforms, particularly when it concerns critical matters of gynecologic cancer care.

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