Do you watch YouTube videos? If so, and you’re between ages 45-64, you’re among the 500 million viewers your age who make up YouTube’s worldwide ad audience. If you’re male, you’re also among the 1 out of every 52 U.S. men between ages 50-59 who will learn they have prostate cancer (PCa), and closer to 6 out of 10 as you turn 65.

The internet is encyclopedic in the amount of health-related information a typical layman can access. And access it they do. A published study by Vu, et al. states, “With over 2 billion users monthly, YouTube is one of the most popular websites and has been demonstrated to be a commonly used source for medical information.”^[i] Also, when the pandemic lessened in-person doctor visits, more people than ever turned to online videos for answers to their questions.

These answers are often questionable when it comes to PCa. For instance, four of the Vu study authors (2 board-certified urologists, a board-certified radiologist, a senior resident) analyzed the quality and misinformation in the 80 most watched YouTube videos on PCa surgery (40 videos) or radiation therapy (40 videos). The most surgery video had nearly 5 million views as of March 1, 2021.

Nearly all videos contained some degree of misinformation. Only 19 were rated to have no misinformation, and videos about radiotherapy were generally rated to have much less misinformation than surgery videos. There was nearly complete absence of information on Active Surveillance.

It’s even worse for Black men

Conditions are worse for Black men. Statistics document the PCa disparities between Black and White men to the Prostate Cancer Research Foundation, “Each year in the US, approximately 1 in 4 Black men will be diagnosed with prostate cancer compared with 1 in 8 white men, and it is estimated that Black men are 2.2 times more likely to die from prostate cancer each year.”

A paper by Shungu, et al. reveals, “The overall quality of videos about prostate cancer screening in Black men is poor, including those with Black presenters. Clinicians should be aware of potential misinformation that Black patients receive from YouTube and the opportunity to improve the quality of available information about prostate cancer screening in Black men.”^[ii] A multicenter research group agrees. After retrieving 150 PCa videos, they note that not only are Black men underrepresented in online educational videos on YouTube and similar sites, but also “… most PCa content lacks diversity and is not readily understandable.”^[iii] This deplorable situation is underscored by another study out of two New York medical schools including my own residency/fellowship alma mater, the Albert Einstein College of Medicine. Those authors write that both YouTube and Tiktok videos are

… widely viewed but do not provide quality consumer health information. Black and Hispanic men remain under-represented on both platforms, and high-risk racial groups were not discussed in most videos despite the importance for screening criteria. The low understandability and actionability, significant misinformation and lack of diversity in online videos support the need for higher quality videos with adequate attention to high-risk ethnic cohorts.

It’s no wonder, then that Black viewers mistrust online PCa video content more than White viewers do. “For groups with a history of experiencing racism and other forms of discrimination, concerns about the trustworthiness of clinicians, health care institutions, and health care systems persist.”^[iv] A July, 2023 JAMA article demonstrates this. The research team conducted a fascinating randomized comparison of factors that influence trust in PCa information provided by video.^[v] Included in the study designers were clinicians, behavioral scientists, and lay members of the PCa community. Together, they scripted and filmed a prostate cancer screening video and another about clinical trials. There were four separate versions with a different male presenter for each: Black physician, White physician, Black patient, White patient, thus producing a total of eight videos. Participant viewers were recruited nationally (1200 Blacks and 1200 Whites of whom 75% were men and 25% women). Viewers were randomly assigned to a single video which they viewed online, and afterward completed an online survey.

The team’s analysis examined “…video features associated with trust with mutual adjustment (speaker race, qualifications, or topic) and … individual factors associated with trust across all prostate cancer videos (ie, demographics, … medical mistrust as well as video features).”

The statistical analysis revealed that both Black and White viewers generally had higher trust in physician vs. patient presenters, and in videos about screening vs. clinical trials. However, White adults had no trust difference whether speakers were Black or White, whereas Black adults had significantly greater trust in Black speakers.

In general, YouTube PCa videos fall short. A 2019 study found, “Many popular YouTube videos about prostate cancer contained biased or poor-quality information. A greater number of views and thumbs up on YouTube does not mean that the information is trustworthy.”^[vi] This is especially concerning given racial disparity in PCa education, awareness, diagnosis, access to treatment, and choice of treatment. YouTube can be a powerful social and clinical influence, but unless clinicians and educators commit to substantial reform in online video PCa content, no change will occur.

I admire and thank the researchers who have gathered evidence of the predominantly biased face of PCa information. Videos must be more ethnically inclusive, the scripts need to be more understandable, and the range of diagnostic and treatment choices discussed must be more objective and representative of alternatives. If the medical world can embrace Martin Luther King, Jr.’s dream that “one day this nation will rise up and live out the true meaning of its creed,” the PCa landscape will achieve equality.

NOTE: This content is solely for purposes of information and does not substitute for diagnostic or medical advice. Talk to your doctor if you are experiencing pelvic pain, or have any other health concerns or questions of a personal medical nature.

References

[i] Vu E, Pratsinis M, Plasswilm L, Schmid HP, Panje C, Betschart P. Radiotherapy or Surgery? Comparative, Qualitative Assessment of Online Patient Education Materials on Prostate Cancer. Curr Oncol. 2021 Sep 6;28(5):3420-3429.
[ii] Shungu N, Haley SP, Berini CR, Foster D, Diaz VA. Quality of YouTube Videos on Prostate Cancer Screening for Black Men. J Am Board Fam Med. 2021 Jul-Aug;34(4):724-731.
[iii] Loeb S, Borno HT, Gomez S, Ravenell J et al. Representation in Online Prostate Cancer Content Lacks Racial and Ethnic Diversity: Implications for Black and Latinx Men. J Urol. 2022 Mar;207(3):559-564.
[iv] Loeb S, Ravenell JE, Gomez SL, et al. The Effect of Racial Concordance on Patient Trust in Online Videos About Prostate Cancer: A Randomized Clinical Trial. JAMA Netw Open. 2023;6(7):e2324395.
[v] Ibid.
[vi] Loeb S, Sengupta S, Butaney M, Macaluso JN Jr et al. Dissemination of Misinformative and Biased Information about Prostate Cancer on YouTube. Eur Urol. 2019 Apr;75(4):564-567.