By Katherine Rivlin, MD, MSc
Associate Professor, Department of Obstetrics and Gynecology, University of Chicago
The top 100 videos on the social media platform TikTok were compiled and systematically analyzed for user demographics and video content. More videos had a negative tone, particularly those conveying patient experiences related to pain and informed consent.
Wu J, Trahair E, Happ M, Swartz J. TikTok, #IUD, and user experience with intrauterine devices reported on social media. Obstet Gynecol 2022; Dec 6. doi: 10.1097/AOG.0000000000005027. [Online ahead of print].
TikTok, a social media application, allows users to create and share short-form videos (about 15 seconds each) on any topic. With about half the U.S. digitally engaged population using TikTok, the application offers a widely viewed and growing platform for reproductive-age people to engage in and explore contraceptive options. However, social media health-related content is not always accurate. A 2021 viral TikTok video depicting an intrauterine device (IUD) self-removal prompted some media outlets to express concerns over the potential for TikTok to influence patient perceptions and the use — and potentially misuse — of contraception.1 To better explore depictions of the IUD on TikTiok, this study systematically analyzes TikTok content tagged as #IUD.
The study team evaluated the top 100 TikTok videos tagged #IUD. The team selected videos based on the number of likes, shares, and comments, and then coded each video. They assessed the quality of videos through two standard scales: the modified five-point DISCERN scale, which measures the quality of written health information, and the Patient Education Materials Assessment Tool (PEMAT), which evaluates the understandability and actionability of each video.
Videos included in the analysis had generated a total of 471 million views, 32 million likes, and 1 million shares. Videos averaged 33 seconds in length. After excluding two non-English language videos, the study team analyzed 98 videos. Content creators were most likely to identify as female (89%) and to live in the United States (90%). A significant minority (37%) identified as healthcare professionals. About one-third of the videos depicted personal patient experiences with IUD placement and removal, another one-third were educational, and the remainder were humorous. More videos (38%) had a negative tone compared to a positive tone (19%), and 40% emphasized a negative IUD user experience.
Distrust of healthcare professionals emerged in 28% of videos. Among videos conveying patient experiences with IUD placement or removal, 81% were negative, with the remainder ambiguous. Almost all (97%) of videos conveying patient IUD experiences highlighted pain and other negative side effects. About a quarter of these videos expressed a desire for anesthesia. Of videos with scientific claims, most were highly (51%) or moderately (20%) accurate, but a significant minority were moderately (20%) or highly (6%) inaccurate. Many of the videos contained catchy music, audiovisual supplements, and persuasive stories. Videos scored low in quality (1.2 out of 5) on the DISCERN scale, and averaged 74% in understandability and 18% in actionability on the PEMAT scale.
COMMENTARY
Patients often rely on social networks, rather than their healthcare providers, when making decisions about contraception.2,3 When IUD experiences in one’s own social network are lacking, social media can fill the gap, providing accessible and affordable sources of health information. Previous studies of IUD testimonials on Twitter and YouTube revealed generally positive (although often inaccurate) content.4,5 This study of TikTok content tells a different story: that the most liked #IUD videos on this application portray negative patient experiences, particularly around pain and informed consent.
TikTok differs from other social media platforms in that, rather than allowing users to manage their experience through interactions with friends and followers, its users engage primarily with an algorithmically curated feed specifically targeted to that user’s demographics and interests.6 The popularity of negative videos on TikTok indicates that users may respond positively to perspectives beyond the traditional patient-physician interaction.
Popular content focused on pain and distrust in the healthcare system should highlight for clinicians the need to better understand our patients’ experiences and needs. No clear pain management strategy exists for reducing pain associated with office IUD insertion other than a paracervical block, which is moderately effective.
Obstetrics and gynecology, as a discipline, must continue to invest in research regarding innovative approaches to IUD insertion pain management, since patients clearly prioritize this aspect of care. Concerns over poor pain management may create barriers to care.7 Similarly, this study’s findings regarding informed consent should be concerning to providers, given the history of reproductive coercion in the United States, particularly for Black, Latinx, and indigenous communities.8
The American College of Obstetrics and Gynecology recommends a shared-decision approach to informed consent. Consent should be patient-centered, individualized, and involve a discussion of the benefits and risks of options, inclusive of a patient's values and priorities.9 TikTok content provides invaluable insights into what our patients may prioritize and where we should focus our counseling efforts.
REFERENCES
- Cassidy C. Viral TikTok video of IUD removal at home prompts warning from health authorities. The Guardian. Published Sept. 23, 2021. https://www.theguardian.com/society/2021/sep/24/viral-tiktok-video-of-iud-removal-at-home-prompts-warning-from-health-authorities
- Yee L , Simon M. The role of the social network in contraceptive decision-making among young, African American and Latina women. J Adolesc Health 2010;47:374-380.
- Fleming KL , Sokoloff A, Raine TR. Attitudes and beliefs about the intrauterine device among teenagers and young women. Contraception 2010;82:178-182.
- Merz AA, Gutiérrez-Sacristán A, Bartz D, et al. Population attitudes toward contraceptive methods over time on a social media platform. Am J Obstet Gynecol 2021;224:597.e1-597.e14.
- Nguyen BT, Allen AJ. Social media and the intrauterine device: A YouTube content analysis. BMJ Sex Reprod Health 2018;44:28-32.
- Bhandari A, Bimo S. TikTok and the “algorithmized self”: A new model of online interaction. AoIR Selected Papers of Internet Research 2020. doi: 10.5210/spir.v2020i0.11172
- American College of Obstetricians and Gynecologists’ Committee on Gynecologic Practice; Long-Acting Reversible Contraceptive Expert Work Group. Committee Opinion No 672: Clinical challenges of long-acting reversible contraceptive methods. Obstet Gynecol 2016;128:e69-77.
- [No authors listed]. Committee Opinion No 695 Summary: Sterilization of women: Ethical issues and considerations. Obstet Gynecol 2017;129:775-776.
- [No authors listed]. Informed consent and shared decision making in obstetrics and gynecology: ACOG Committee Opinion, Number 819. Obstet Gynecol 2021;137:e34-e41.
