Online Prostate Cancer Content Lacks Racial and Ethnic Diversity: A Review

A recently published study by Loeb et al¹ sought to evaluate whether online patient education information about prostate cancer was inclusive of Black and Latinx communities. The authors based this important investigation on the existing literature, which consistently indicates that Black men have a higher incidence of prostate cancer, with an increased rate of mortality and lower quality of life related to their diagnosis, compared with the overall male population.^2,3

Similarly, Latinx men are more likely to present with advanced disease at the time of diagnosis and are less likely than the overall population to receive standard-of-care guidelines-based treatment.⁴ Loeb et al contest that the continued growth in access to and use of the internet means that many individuals seek medical information from online sources that target specific audiences. In theory, this has the potential to mitigate healthcare disparities. However, there is a paucity of literature investigating the quality of online prostate cancer education content and its relatability to Black and Latinx communities.

The authors noted that evidence suggests Black adults are more likely than those in other ethnic groups to distrust the healthcare system⁵ and are more likely to trust internet-based resources such as YouTube to inform their health knowledge.^6,7 They remarked that previous studies have emphasized that individuals have positive perceptions of information sources they regard as concordant with their own identity.⁸ In addition to investigating the availability of educational content targeted to these populations, the researchers aimed to evaluate whether the information available on major internet sites is of high quality and clarity.

The study design was a systematic review of top websites, conducted via Google search, and evaluation of YouTube video resources, which yielded 150 websites and 150 videos. Several safeguards were implemented to ensure the results were not limited based on website search personalization. After exclusion criteria were applied, 81 websites and 127 YouTube videos were included in the analysis. At least 3 investigators reviewed content independently to evaluate the resources for racial inclusion. The primary outcome was inclusion of Black/African American representation in the content, and the secondary outcome was Latinx representation.

The researchers evaluated the actual content of the material using 2 validated criteria: DISCERN, a 16-item validation tool that focuses on quality of consumer health information,⁹ and the US Agency for Healthcare Research and Quality (AHRQ) Patient Education Materials Assessment Tool (PEMAT), which measures clarity based on how easily the information in patient education materials can be understood and acted upon.¹⁰ They also evaluated for content misinformation and reading level.

The results indicated that 30 of the 81 (37.0%) websites and 31 of the 127 (24.4%) videos contained perceived representation of Black men, while 8 (9.9%) websites and 7 (5.5%) videos had Latinx representation. The combined total of websites and videos depicted 1526 people (865 on websites; 661 on YouTube videos). The majority of those depicted were perceived as White (54.8%), followed by Black (9.2%), and Asian (8.1%). Another 425 (27.9%) were not classified by race or ethnicity due to unknown demographic status or lack of a clear consensus. Latinx ethnicity was perceived in just 15 people, accounting for only 1% of those represented.

The authors included a figure illustrating that the data they found were not concordant with demographics in US prostate cancer census data or US prostate cancer survivorship data.¹¹ Moreover, none of the online resources with Black or Latinx representation were found to provide information at an appropriate reading level. Racial and ethnic disparities were mentioned in 27.2% of the websites and 17.3% of YouTube videos, with most focused on disparities in risk (70.5%), treatment (4.6%), or both (18.2%).

As the authors explained, well-known healthcare disparities that specifically impact Black and Latinx communities are potentially exacerbated when patient-education resources are characterized by significant underrepresentation and literacy devaluation of these populations. They highlighted that both the lack of available resources and the existing distrust of healthcare providers in these communities make the clarity and actionability of other avenues for patient education especially important. In this regard, they cited information that supports the utility of health communications outside the physician’s office to improve patient care.¹²

They also encouraged efforts to promote creating and harnessing the potential of online resources, which can direct major traffic to disease-education information when they are geared toward populations that can derive the most benefit from them. They underscored that these resources should be patient-centered, of high quality, and inclusive in their representation of a racially and ethnically diverse population. They further suggested that professional organizations should play a role in the creation and dissemination of these resources, and, indeed, there are some currently available through agencies like the National Institutes of Health (NIH).

Limitations of the study included the fact that many websites and videos do not contain any representations of people, which may have impacted the resource sample size. Additionally, the study exclusion criteria limited search results to content available in English. This is significant because some members of the Latinx community may prefer to use information written in Spanish, which could have affected the analysis in this study.

Despite these limitations, however, this report provides important perspective by examining another approach to reducing the racial/ethnic disparities in the US healthcare system. It is the first of its kind to evaluate online prostate cancer content and its relationship to patient education.

David Ambinder, MD is a urology resident at New York Medical College / Westchester Medical Center. His interests include surgical education, GU oncology and advancements in technology in urology. A significant portion of his research has been focused on litigation in urology. 

References

1. Loeb S, Borno HT, Gomez S, et al. Representation in online prostate cancer content lacks racial and ethnic diversity: implications for Black and Latinx men. J Urol. 2022;207(3):559-564. doi: 10.1097/JU.0000000000002257
2. SEER*Explorer: an interactive website for SEER cancer statistics [Internet]. Surveillance Research Program, National Cancer Institute. [Cited 2021 September 27]. https://seer.cancer.gov/explorer/. Accessed December 10, 2020.
3. Hurwitz LM, Cullen J, Kim DJ et al. Longitudinal regret after treatment for low- and intermediate-risk prostate cancer. Cancer. 2017;123(21):4252-4258. doi: 10.1002/cncr.30841
4. Dickey SL, Ogunsanya ME. Quality of life among black prostate cancer survivors: an integrative review. Am J Mens Health. 2018;12(5):1648-1664. doi: 10.1177/155798831878085
5. Lichtensztajn DY, Leppert JT, Brooks JD, et al. Undertreatment of high-risk localized prostate cancer in the California Latino population. J Natl Compr Canc Netw. 2018;16(11):1353-1360. doi: 10.6004/jnccn.2018.7060
6. Kennedy BR, Mathis CC, Woods AK. African Americans and their distrust of the health care system: healthcare for diverse populations. J Cult Divers. 2007;14(2):56-60.
7. Pew Research Center. Social media fact sheet. April 7, 2021. https:// www.pewinternet.org/fact-sheet/social-media/. Accessed December 6, 2021.
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9. Sun Y, Zhang Y, Gwizdka J, Trace CB. Consumer evaluation of the quality of online health information: systematic literature review of relevant criteria and indicators. J Med Internet Res. 2019;21(5): e12522. doi: 10.2196/12522
10. The DISCERN Instrument. DISCERN Quality Criteria for Consumer Health Information. DISCERN 2020. http://www.discern.org.uk/ discern_instrument.php. Accessed June 28, 2020.
11. The Patient Education Materials Assessment Tool (PEMAT) and User’s Guide. Content last reviewed November 2020. Agency for Healthcare Research and Quality, Rockville, MD. https://www.ahrq.gov/health-literacy/patient-education/pemat.html. Accessed February 21, 2022.
12. US Department of Health and Human Services, National Institutes of Health, National Cancer Institute. Making Health Communication Programs Work. https://www.cancer.gov/publications/health-communication/pink-book.pdf. Accessed January 11, 2020.