In a recent study published in the journal Gynecologic Oncology, researchers from The Ohio State University Comprehensive Cancer Center—Arthur G. James Cancer Hospital and Richard J. Solove Research Institute have shed light on the alarming proliferation of misleading and factually inaccurate health information related to gynecologic cancers on the popular social media platform TikTok.
The study, led by senior author Laura Chambers, DO, underscores the potent influence of social media in disseminating potentially harmful misinformation that could have adverse effects on patient health outcomes. Moreover, it highlights an essential opportunity to address unspoken concerns and gaps in care that patients may face but seldom discuss during clinical appointments.
Dr. Chambers, an osteopathic physician at the OSUCCC—James, sought to delve into the unexpressed worries of her patients, predominantly mothers and young women, by examining their usage of social media, the nature of the information they share, and how they consume such content.
“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 to be addressed,” Dr. Chambers explained. “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.”
For their investigation, the research team systematically scrutinized the 500 most popular TikTok posts related to gynecologic cancers and analyzed the top five hashtags for each category, including ovarian, endometrial, cervical, vulvar cancers, and gestational trophoblastic disease. They evaluated key themes, the quality of information, and the reliability of gynecologic cancer-related content on TikTok, collecting demographic data, assessing message tone, and categorizing thematic topics.
The results of the study revealed a troubling trend. The majority of the information shared on TikTok about gynecologic cancers was of poor quality, with at least 73% of the content being inaccurate and of low educational value. Furthermore, racial disparities in gynecologic cancer information extended into this social media space.
Dr. Chambers emphasized, “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 the treatment of these cancers.”
While recognizing the vulnerability displayed in social media content related to personal cancer journeys, the study underscores the importance of cultivating a healthcare environment that fosters trust and open conversations with patients. It also calls for broader efforts to provide quality health information and support services to individuals seeking information about gynecologic cancers.
Dr. Chambers encourages patients seeking a supportive community of individuals going through similar experiences to explore both in-person and online support communities sponsored by reputable medical and patient advocacy organizations.
These concerning findings were also presented in two poster presentations at the 2023 Annual Meeting for the Society of Gynecologic Oncology in Tampa, Florida.