Gaps in Public Awareness About BRCA and Genetic Testing in Prostate Cancer: Social Media Landscape Analysis

Introduction

Genetic testing, particularly for BRCA1 and BRCA2, has an increasing role in prostate cancer (PCa) management, screening, and hereditary cancer risk assessment [1-4]. Up to 12%-15% of metastatic disease and 5%-7% of early stage disease involve inherited genetic mutations in cancer risk genes [5,6]. PCa is the leading cancer diagnosed in US men, and inherited PCa impacts thousands of men [7]. Furthermore, hereditary cancer has important implications for family members, informing additional cancer risks and screening measures. Importantly, recommendations for PCa genetic testing have significantly expanded to include a large subset of men with or at risk for PCa [1,3,4]. For men with metastatic, castration-resistant PCa who carry BRCA mutations, the FDA has approved 2 poly-ADP ribose polymerase (PARP) inhibitors as targeted therapy after progression on standard therapy [8-10]. BRCA mutation status is also included in guidelines for PCa screening [4], and men with BRCA2 mutations have more reclassification during active surveillance for favorable-risk disease [11].

Despite the importance of genetic factors in PCa management and hereditary cancer risk, the extent of public awareness is unclear. Previous studies have shown that public awareness and social media discourse are substantially greater for breast cancer compared with PCa [12,13]; however, these studies did not investigate discussions about genetics. Breast cancer is the leading cancer diagnosis among US women [7], and is a useful comparator for PCa because both can be inherited, and genetic mutations in BRCA1/2 also affect screening and treatment recommendations in breast cancer [4,14].

As much as 3 in 4 US adults use 1 or more social media sites [15]. People increasingly use social media to look for health information, share their experiences, and communicate with others, which ultimately impacts their health beliefs and behaviors [16-18]. Social media provides unique insights into how people talk about, behave, and look for an array of health topics. These data have been used to inform prevention programming and messaging, and to scale-up prevention efforts and increase reach [19,20].

This topic is important, as recent data suggest that germline testing is underutilized in PCa [21], and that participating in social networks influences clinical decision making and health behaviors among patients with PCa [22]. From prevention, to treatment, to survivorship, social media provides an important space for communities and the general public to learn and share information about cancer and cancer prevention [20,23-25].

Our objective was to examine the current social media landscape regarding BRCA and genetic testing in PCa relative to breast cancer to provide insights into public awareness and inform strategies to enhance dissemination.

Methods

We characterized activity and engagement across multiple social media platforms (Twitter, Facebook, and YouTube) regarding BRCA and #genetictesting for PCa compared with breast cancer.

Twitter

The Symplur Signals platform was used to examine analytics for all tweets between 2016 and 2020 with the hashtags (1) #BRCA AND #breastcancer, (2) #BRCA AND #prostatecancer, (3) #genetictesting AND #breastcancer, and (4) #genetictesting AND #prostatecancer. We calculated the total number of tweets, users, and impressions (ie, potential accounts reached).

To further characterize the content and contributors, in June 2019, we exported all unique 2018 tweets for each hashtag and manually coded all PCa tweets due to the smaller sample size, a random 10% sample about #breastcancer #BRCA, and a random 50% sample about #breastcancer #genetictesting. A codebook was created through team consensus, based on our previous work [26]. Perceived race/ethnicity was coded by team consensus, as in prior studies [27]. Misinformation was assessed in comparison to guidelines and published literature [28]. The codebook was tested in a random sample with checks to verify intercoder variability and refined by the study team. Disagreements about codes were resolved by consensus.

Facebook

From March to April 2020, we searched Facebook using the same 4 terms. To mitigate bias associated with Facebook’s user-centric search function, we cleared and unlinked prior account information [29]. The first 40 results for each term were examined. The Facebook search included the categories “Groups,” “Pages,” and “Videos.” We excluded duplicates and unrelated results.

We examined public metadata for Facebook groups, pages, and videos. For groups, we examined average number of members, average number of new posts and members within 30 days, and public versus private. For pages, we examined average followers, like counts, and date of page creation. For groups and pages, we analyzed their primary focus based on the provided descriptions, including awareness, support, treatment, research, and news (not mutually exclusive). For public Facebook videos, we counted average views, likes, and comments at the time of collection.

YouTube

From March to April 2020, we searched YouTube using the same 4 terms as above after clearing account history, and examined the first 40 results for each. We excluded duplicates and unrelated results. We counted average views, likes, and comments at the time of collection. We standardized likes per video, views, and engagement rates.

Statistical Analysis

Both PCa search terms were combined and compared with breast cancer terms. Summary statistics and 95% confidence intervals were calculated using SAS (SAS Institute) and Stata/IC 16 (StataCorp).

Results

Twitter

From 2016 to 2020, in PCa and breast cancer there were 1008 and 10,005 tweets about BRCA, and 328 and 1748 tweets about genetic testing, respectively (see Figure 1 for trend over time). Users and reach were also substantially higher for BRCA and genetic testing in breast cancer relative to PCa throughout 5-year period.

Coding of a subset of Tweets is shown in Multimedia Appendix 1. The most common type of post was sharing an article link. Sentiment was mostly neutral. Misinformation was rare. Gender was mentioned more often than race. For tweets about BRCA, the most common tweeters were foundations/advocacy groups followed by health professionals, whereas for tweets about genetic testing, foundations/advocacy groups and commercial entities were the most common. Among individual Twitter contributors, most were perceived as White and female for all topics except PCa genetic testing for which the largest number of users were perceived as White males.

‎View this figure

Facebook Groups and Pages

Table 1 shows results for 73 Facebook groups and 80 Facebook pages. PCa groups had fewer average members than breast cancer groups. This was consistent with other variables including average number of posts and members in the past 30 days. For Facebook pages, breast cancer pages had higher followers and likes than PCa. Among PCa and breast cancer groups and pages, most focused on awareness, support, and treatment (Multimedia Appendix 2).

Facebook and YouTube Videos

Among 230 videos analyzed (Table 2), Facebook videos exhibited higher view counts and more comments. Average likes per view for PCa videos on Facebook were similar to that of YouTube, while breast cancer had more likes per view on Facebook than YouTube. Engagement rate for PCa was slightly higher on YouTube, whereas for breast cancer it was higher on Facebook.

Discussion

Our results show substantial discussion about BRCA and genetic testing on popular social networks, although with more participation and engagement for breast cancer than PCa. This corroborates previous studies showing that PCa in general has less social media engagement [12,13], and raises less funding through crowdfunding than breast cancer [30]. Since PCa germline testing guidelines have expanded [3,4], thousands of men are eligible for testing, which may inform management and hereditary cancer risk. As the majority of adults look online for health information and social media use among older adults continues to rise [15,31], a lack of social discourse about PCa and genetic testing may hinder men from knowing that this option is available.

Our results raise concern for modest social media activity and participation, and lack of public awareness about the importance of PCa germline testing; follow-up studies are needed to determine whether this is hindering the impact of genetic advances. Future research is also warranted to draw from the greater social media experience in breast cancer, and to examine the potential for targeted social media campaigns to increase awareness and uptake of genetic evaluation for PCa.

A positive finding of the study was the minimal presence of misinformation on Twitter related to genetic testing and BRCA in breast cancer or PCa. This is in stark contrast to previous studies suggesting a substantial amount of misinformation about PCa on other social networks such as YouTube [28]. A possible explanation was the high proportion of tweets from health care professionals and foundations.

A limitation of this study is that only a subset of social media platforms and posts including these specific hashtags/search terms was evaluated. Additionally, coding of certain variables, such as perceived gender and race/ethnicity, is inherently subjective. Strengths include the first landscape analysis of social media activity related to BRCA and genetic testing in PCa, compared with breast cancer. These data are useful to inform public awareness strategies. Although YouTube is the largest overall video-sharing network, we found that videos about genetic testing had greater reach on Facebook, suggesting that it should be used to disseminate video content to the public. In addition, we found that Twitter is a valuable resource to follow research updates about germline testing for health care professionals and other stakeholders.

In conclusion, there is substantially less social media activity regarding BRCA and genetic testing in PCa relative to breast cancer. These results highlight a major need to increase public awareness and support for genetic testing for PCa to enhance the impact of the precision medicine era.