The majority of information related to gynecologic cancers on the social media platform TikTok may be misleading or inaccurate, according to a recent study published by Morton et al in Gynecologic Oncology.
Background
“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,” stressed senior study author Laura Chambers, DO, an osteopathic physician at The Ohio State University Comprehensive Cancer Center–Arthur G. James Cancer Hospital and Richard J. Solove Research Institute. “As [physicians], 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,” she added.
Dr. Chambers and her colleagues sought to learn more about the unspoken concerns of patients with gynecologic cancer—who are often mothers and young women—and to understand how these patients were using social media, what information they were sharing, and how they were consuming that information.
Study Methods and Results
In the new study, investigators systematically searched TikTok for the 500 most popular posts and analyzed the top five hashtags related to several gynecologic cancers—including ovarian cancer, endometrial cancer, cervical cancer, vulvar cancer, and gestational trophoblastic disease—for key themes, quality of information, and reliability of content. The investigators also collected information related to demographics, message tone, and thematic topics. Educational videos were rated for quality using an established health education information scale. They reported that as of August 2022, the top five hashtags for each gynecologic cancer had more than 466 million views.
The investigators found that, overall, the quality of the information shared through TikTok was poor, and at least 73% of the content was inaccurate and scored low on educational quality. Further, racial disparities in gynecologic cancer extended into the social media space.
Conclusions
The investigators emphasized that their new findings may highlight the power of social media to feed misinformation to patients that can be harmful to their health outcomes, but they also present an opportunity to address gaps less likely to come up during a clinical appointment.
“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 noted. “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?” she underscored.
The investigators encouraged patients who desire a community of like-minded patients going through similar experiences to seek out in-person and online support communities sponsored by reputable medical and patient advocacy organizations.
Disclosure: For full disclosures of the study authors, visit gynecologiconcology-online.net.
