Andrea Miyahira: Hi, everyone. I'm Andrea Miyahira at the Prostate Cancer Foundation. I'm pleased to have with me Dr. Stacy Loeb of NYU to discuss one of her latest papers, Quality of English- and Spanish-language online content about prostate cancer genetics: Insights into potential contributors to prostate cancer disparities. This was published in BJUI Compass.

Dr. Loeb, thanks for joining us.

Stacy Loeb: Thank you so much for the invitation. I'm excited to present this study on behalf of all of our co-authors.

We looked at the quality of English and Spanish-language content on the internet about prostate cancer genetics as a potential contributor to disparities. The rationale behind this study is that genetic testing is increasingly important for prostate cancer management, but also for understanding the patient and their family members' risk of hereditary cancers. But despite its importance, genetic testing is greatly underutilized in prostate cancer, particularly among minoritized groups. In fact, previous studies have shown significantly lower rates of genetic evaluation in Hispanic and in non-English-preferring patients.

We were interested to understand whether online information could be a possible contributor to these disparities. So, we looked at the most popular search engine, which is Google, and the most popular social media platform, which is YouTube, and searched for "prostate cancer and genetics" and "prostate cancer and BRCA" in both English and Spanish on these platforms. We reviewed the top 25 hits for each of these searches using validated criteria for the quality of consumer health information as well as for its understandability and actionability for lay health consumers.

What we found is that only 69% of the English-language results and 51% of the Spanish-language results were actually relevant to the topic. So, a large proportion of things that came up were not even relevant, even covering other types of tests that do not provide genetic information. But then most concerning, even within this small amount of relevant content there were very few postings that actually met quality criteria, which we defined as a composite of having a high DISCERN score, indicating balanced, good-quality information, and also scoring over 75% for understandability and actionability.

So, the bottom line is, it's certainly challenging to find relevant and high-quality content about prostate cancer genetics, especially in Spanish. And unfortunately, really in both languages, most of the top content didn't meet validated criteria for consumer health information. So, I think that we really do need more high-quality multilingual content to promote equitable uptake.

So, I'd like to thank the Department of Defense for supporting this study and UroToday for helping us share this information.

Andrea Miyahira: Well, thank you so much, Dr. Loeb, for sharing this really important study with us.

So, can you talk more broadly about how this fits with your research about the internet for prostate cancer and whether this is good or bad?

Stacy Loeb: For sure. And I'd like to acknowledge the Prostate Cancer Foundation for providing the initial support for our research program related to studying the quality of information about prostate cancer on the internet.

And honestly, there's a lot of good and a lot of bad. There is a lot of great information out there and it can help provide patient empowerment. Watching videos can help patients prepare for procedures. Sometimes patients adopt healthier lifestyle habits due to feeling motivated by things that they've seen online.

But then there is this dark side. There is also online misinformation, which is something that we've also studied extensively. There's also a lack of diverse representation. And so, in our previous studies before this, we actually looked at the people who were depicted in websites and YouTube videos about prostate cancer and found significant under-representation of Black and Hispanic males, despite the fact that these groups have a higher risk of high-risk disease. And when we did some focus groups with patients, we heard from Black patients that some thought that they were at lower risk of prostate cancer or even that they don't get it because they never saw any Black faces.

And so, I think since the vast majority of people are going online to look at health information, it's very important that we know what they see. And any time we see disparities in care, it's important to understand whether the information that is out there is potentially even exacerbating these disparities.

Andrea Miyahira: Thank you. And as preferred digital platforms evolve and change, for instance, we know there are generational differences in preferred social media apps, and there's also the rise of chatbots.

How should researchers and clinicians change how science and medical communications are done? And are there best practices including for different platforms and media types?

Stacy Loeb: For sure. Well, for one thing, YouTube is the most popular social media platform in the US. So, I think that's a very important place to promote things. If you have good content, there's no reason not to share it across multiple social media platforms just to reach different audiences.

But I do think that we should be wary of who we're reaching and that we do have content. There is a lot of good content that is put out by doctors and professional societies, but it uses a lot of medical jargon and it's really not directed at lay audiences. So, I do think that researchers should spend more time on developing the lay relevance and messages for the general public about their research, because in the end, for us to have true impact, our research findings need to be disseminated more broadly, not just in the scientific community.

Andrea Miyahira: So, what advice do you have for researchers and clinicians on how and where to communicate effectively to the public and to patients and how to do so across languages?

Stacy Loeb: Yeah. So, this can certainly be challenging, especially if you're not proficient in other languages. Now, interestingly, there was a study that came out just this past week, I believe, in JAMA Network Open, that was looking at the use of AI chatbots to help translate patient education materials into Spanish. And they actually did this comparison between the ones that were translated by the chatbots versus professional translators, and they found no significant difference in the quality.

So speaking of the chatbots, I think this is a place where AI may be able to help us to be able to broaden the reach of any good content that we're creating.

Andrea Miyahira: Thank you. And what advice do you have for patients or caregivers who are looking for accurate medical information about prostate cancer in their preferred language?

Stacy Loeb: Yeah. So, thankfully there are some very high-quality resources about prostate cancer in Spanish specifically. For example, the Prostate Cancer Foundation has the patient guide available in Spanish. The Urology Care Foundation, which is the American Urological Association's patient branch, actually has a patient fact sheet on prostate cancer genetics in Spanish.

So these things are out there, and I know about them because I'm a physician working in this space. So, I think the onus is on us as clinicians to give our patients an information prescription with high-quality, vetted resources that they can trust, that are relevant to their situation. And if you're a patient or a caregiver, ask your clinical team for recommended sources of information, because if you just go search randomly, there is a great probability that what you encounter is either not relevant to your situation or not high quality, and that's really problematic.

Andrea Miyahira: Thanks. What are your next planned studies in this area of medical content and communications?

Stacy Loeb: Well, for one thing, we want to follow up on this by actually expanding the amount of available information on prostate cancer genetics that is patient-friendly in both English and Spanish.

So, our next step will be to create bilingual content about prostate cancer genetics using lay language, and to actually vet that content with patients and families who are proficient in different languages. So, I think the first step is to figure out where the gaps are and then figure out what we can create that might help our patients.

Andrea Miyahira: Well, thank you so much, Dr. Loeb, for discussing this with us and sharing this with us today, and it's such an important topic.

Stacy Loeb: Thank you.