POV: You’re scrolling TikTok for gynecologic cancer info, but your FYP (for you page) is filled with conflicting information, and everyone has a different “cause” or “cure” that is a must-follow. Doctors say: “Stick to the facts, not the TikToks,” as a new study shows that social media is spreading cancer misinformation.
The study, published by Ohio State University Comprehensive Cancer Center researchers has revealed that millions of women are turning to TikTok for information about gynecologic cancers, but unfortunately, most of the content found on the platform is misleading or inaccurate.1
In a press release from The James, Dr. Laura Chambers, the lead author of the report explained that this situation presents both a challenge and an opportunity.2 The widespread misinformation poses a risk to patients’ health outcomes, she says, as they may be making decisions based on incorrect or incomplete information. However, it also indicates a need that is not being fully met within traditional healthcare settings. Many women, especially young mothers, are struggling with issues that may not be easily addressed during clinic appointments.
Dr. Chambers and colleagues analyzed the top 500 TikTok posts related to gynecologic cancers, focusing on themes, information quality, and reliability. They found that the majority of the content was inaccurate (73%) and of poor educational quality, meaning that the health claims were false based on current scientific knowledge, across different creator racial groups.1
This lack of reliable information is particularly concerning given the racial disparities already present in gynecologic cancer diagnoses and treatment.3-5 Cancer misinformation was widespread among Black, Hispanic, and White communities. This is was an alarming finding, asHispanic/Latino and Black/African American women already have higher incidence rates of cervical cancer.3
TikTok under the microscope
In August 2022, the researchers conducted a comprehensive analysis of TikTok, examining the top 100 most popular posts related to ovarian cancer, endometrial cancer, cervical cancer, vulvar cancer, and gestational trophoblastic disease. The analysis focused on various aspects of the content, including the demographics of the creators, the tone of the messages, and the topics discussed (ovarian cancer, endometrial cancer, cervical cancer, vulvar cancer, and gestational trophoblastic disease).
Educational videos, in particular, were scrutinized for their quality and reliability using the modified DISCERN scale, a validated tool for evaluating health information resources. This allowed researchers to assess the accuracy and trustworthiness of the information being shared on the platform.
They also investigated potential relationships between content creator race demographics, specific types of gynecologic cancers, and prevalent themes. This overview aimed to provide a deeper understanding of gynecologic cancer information on TikTok, showing potential areas for improvement in the quality and accuracy of content.
Millions of views but minimal reliable info
The researchers found significant engagement with gynecologic cancer content on English Language TikTok, with the top hashtags garnering a staggering 466.7 million views as of August 2022.1
The majority of content creators were White (75.1%), followed by Black (7.7%), Hispanic/Latino/a (4.7%), Asian/Pacific Islander (4.6%), and South Asian (2.3%).1 The study identified eleven key themes in the content, with notable differences observed across different cancer types and racial groups.
The quality of information shared on the platform was particularly concerning. They used the DISCERN scale, which has 15 questions that are rated on a scale of low to high (one to five), to identify content bias, relevance, clarity, and evidence.
The median DISCERN score was only 1.0, indicating poor overall health resource information quality. While South Asian and Asian/Pacific Islander creators received the highest DISCERN scores, the scores for Black, Hispanic/Latino/a, and White creators were significantly lower, highlighting potential disparities in the quality of information available to different racial groups.1
Bridging the gap in gynecologic cancer care
The study has sparked further questions about how to address the spread of misinformation and better connect with patients, especially in terms of creating more diverse and culturally relevant content. In the press release, Dr. Chambers emphasized the importance of fostering trust and open communication between healthcare providers and patients, encouraging those seeking information to turn to reputable sources like in-person and online support communities sponsored by medical organizations and patient advocacy groups.2
“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,” Chambers said in a press release.
“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?”
References
- Morton M, Haight PJ, Khadraoui W, et al. “More than a song and dance”: Exploration of patient perspectives and educational quality of gynecologic cancer content on TikTok. Gynecol Oncol. 2023;175:81-87. doi:10.1016/j.ygyno.2023.06.004
- Study: Gynecologic cancer misinformation widespread on TikTok (no date) James Cancer Hospital and Solove Research Institute. Available at: https://james.multimedia-newsroom.com/index.php/2023/09/18/tiktok-headline/ (Accessed: 03 August 2024).
- Cancer disparities (no date) NCI. Available at: https://www.cancer.gov/about-cancer/understanding/disparities (Accessed: 29 July 2024).
- Jemal A, Siegel R. Social inequalities in cancer burden between Black and White populations in the USA. In: Vaccarella S, Lortet-Tieulent J, Saracci R, et al., editors. Reducing social inequalities in cancer: evidence and priorities for research. Lyon (FR): International Agency for Research on Cancer; 2019. (IARC Scientific Publications, No. 168.) Focus 7. Available from: https://www.ncbi.nlm.nih.gov/books/NBK566203/
- American Cancer Society’s cancer disparities report: Non-metropolitan areas, people of lower socioeconomic status, Black and American Indian/Alaska native people carry highest cancer burden (no date) American Cancer Society MediaRoom. Available at: https://pressroom.cancer.org/releases?item=1281 (Accessed: 29 July 2024).
Hello medicalnewsbulletin.com owner, Thanks for the well-researched and well-written post!