Representation Matters: Trust in Digital Health Information Among Black Patients with Prostate Cancer - Stacy Loeb

March 15, 2024

Stacy Loeb discusses her study on digital health information trust among Black prostate cancer patients, published in the Journal of Urology. Dr. Loeb's research reveals a stark lack of racial and ethnic diversity in online prostate cancer content, which significantly impacts trust among Black patients. This study, underpinned by analysis of social network use and content representation, involves a randomized trial demonstrating increased trust when information is presented by Black speakers. Further focus groups identify key trust factors, including racial representation and source credibility. The findings underscore the importance of diverse representation in healthcare information to combat disparities and suggest clinicians should proactively recommend high-quality, diverse resources to patients. Dr. Loeb emphasizes the role of clinicians in combating misinformation and enhancing trust through evidence-based, lay-friendly communication, particularly addressing misconceptions about prostate cancer risk among Black men.


Stacy Loeb, MD, Professor of Urology and Population Health, NYU Langone Health, New York, NY

Andrea K. Miyahira, PhD, Director of Global Research & Scientific Communications, The Prostate Cancer Foundation

Read the Full Video Transcript

Andrea Miyahira: Hi everyone. I'm Andrea Miyahira at the Prostate Cancer Foundation. With me today is Dr. Stacy Loeb, a professor at NYU Langone Health and the Manhattan VA. We are discussing Dr. Loeb's recent paper, "Representation Matters: Trust in Digital Health Information Among Black Patients With Prostate Cancer," that was published in the Journal of Urology. Dr. Loeb, thanks for taking the time to share this study with us.

Stacy Loeb: Thank you so much for the invitation. Thank you very much for the opportunity to be here today. I'm just going to share a little bit of the background of this study. First and foremost, a large portion of US adults are using online networks for information, particularly Black and Hispanic adults with very high rates of use of social networks. Unfortunately, many of the posts that are featured on social networks about prostate cancer have limited racial and ethnic diversity. For example, this is a study that we published with Dr. Hala Borno, another PCF-funded investigator, looking at YouTube videos about prostate cancer clinical trials.

And what we found is that among the people who were featured in the top 150 videos about clinical trials, only 4% were perceived as Black. And we're concerned that this may play a role in the underrepresentation of Black adults in prostate cancer clinical trials. We then went on to conduct another study looking at information about just prostate cancer in general. So, we looked at the first 150 websites that came up in a Google search and the first 150 YouTube videos about prostate cancer in general. And there were more than 1500 people that were featured, and only 9% were perceived as Black and 1% as Latinx.

This was followed by a randomized trial where we were interested to look at what is the impact of racial representation on trust in online information. So, more than 2900 US adults were randomly assigned to watch a video about prostate cancer that featured either a Black patient, a Black doctor, a white patient, or a white doctor presenting the same information. What we found is that on the multivariable analysis, after adjusting for other socioeconomic factors, literacy, and medical mistrust, that for Black adults there was significantly more trust if the speaker was Black. Whereas for white adults, the race of the speaker was not associated with trust in the information. Also, we found less trust in videos that had a patient presenting the information instead of a physician or that were about clinical trials compared to screening. We then went on to do these more recent studies, including the paper that we're talking about today in the Journal of Urology, where we conducted focus groups with Black patients with prostate cancer to get more in-depth views on their perspectives about digital information and the factors that are associated with trust.

And what we found, first of all, is that patients and their families are frequently using the internet and social networks for information about prostate cancer. They're interested in many different topics and are using it throughout their journey, including both before and after visits with the doctor. And certainly, it's having some benefits for them. They feel more informed, they feel that it's creating greater accountability for research. But it also has had harm, including anxiety, disrupting sleep, and affecting perceptions of risk. So in this paper in the Journal of Urology, we did a deeper dive on some of the key factors that affect trust among Black patients with prostate cancer, and one of these is racial representation.

In fact, in some cases, if there were not any Black doctors featured at a particular clinic website or in an organization, none of the leadership included any representation of Black adults, then some of the participants would simply navigate away from the content or didn't think that it pertained to them. Another factor that came out in these interviews is that there was this perception of lower risk where some of the participants thought that because they weren't seeing any Black faces in the online content about prostate cancer, that Black people are not affected by prostate cancer or are maybe at lower risk. Which really is in contrast to national statistics on prostate cancer incidence and mortality. So that is potentially dangerous. Other factors that affect trust are the source of information. All of the participants were really looking for a trusted organization like the Mayo Clinic came up in a lot of interviews. They like to see content with a professional design and were also very put off by any requests for money or perceived conflict of interest.

So this is a nice summary of the findings: "It's always better to have diverse representation on any website. Different people may identify more or less by seeing people like themselves. So you will have more net people for your site and the information you're providing if you have diverse representation." So, a very nice quote from a participant that summarizes some of the findings. In conclusion, we found that online content lacks racial and ethnic diversity and that this affects trust among Black patients with prostate cancer. And the deficiencies in online information may be an under-recognized contributor to the observed health disparities that we see.

Andrea Miyahira: Thank you, Dr. Loeb, for sharing that with us. So I guess my first question is, what is your message to clinicians regarding your findings? For instance, should they be actively reviewing the content their organization is putting out and making recommendations for changes? And what kinds of recommendations should they be giving their patients who are seeking more information?

Stacy Loeb: Great question. First of all, I think one very important strategy for clinicians is to give an information prescription to patients. So in addition to prescribing things like drugs, we can also prescribe information. And because there is so much poor-quality information out there and that also lacks racial and ethnic diversity, as clinicians, we should source out what we think are the best places that have both high-quality content and that reflect the diversity of the target audience. And share links and recommendations proactively with patients. And yes, I agree with you. I think it's also important to look at the materials that our own organizations are putting out and to look deeply within our organization and ensure that we're doing everything that we can to increase, for example, the diversity of the medical workforce so that the workforce in the healthcare sector is more reflective of the populations that we serve.

Andrea Miyahira: Yeah, very important point. So for clinicians and researchers, most of them have direct control over their own social media. Do you have recommendations for ways to improve trust with Black patients or just on health in general in those areas of communications?

Stacy Loeb: This is a great question. And I think just really getting out there and putting out evidence-based information, and especially in areas where there may be misperceptions. For example, this misperception that Black males may be at lower risk of prostate cancer. I think it's very important for experts in the field to share evidence-based information and make sure that people know what is available in terms of screening and all of the developments that there have been in treatment for prostate cancer. Also, I think for both clinicians and researchers, that sharing content that is friendly for lay audiences is very important. For our research and everything that we do to have the most impact, it's very important that we distill it to be able to democratize information and make sure that all of our important results are reaching the people who need it the most.

Andrea Miyahira: Thank you. So your study suggests there's a difference in medical trust between African American patients versus patients from Africa, with African American patients exhibiting less trust, which is likely due to the US' history of systemic and medical racism. Do you see this difference in trust impact downstream outcomes such as rates of healthcare services sought or adherence to medical recommendations or clinical trial participation or even clinical outcomes?

Stacy Loeb: That's a really good question. This was definitely a very intriguing finding where what we noticed in our focus groups is that there did seem to be this emerging difference based on nativity. And the importance of racial representation really came up a lot and dominantly among African American participants. Whereas among African-born participants, it didn't have the same level of priority. And the participants themselves actually attributed this to the history of medical racism in the United States.

Our study wasn't powered to look at that particular question, but I think it's definitely a hypothesis-generating finding. And I definitely do think that this has the potential to affect downstream outcomes. Because, for example, if you don't see representation in the videos about clinical trials and that is a critical factor for you, then that could affect the likelihood of participating in that trial, for example. Or if you aren't seeing any representation in the clinic that you would've gone to and you navigate away or don't look at the information, then that could affect care that you might be accessing or information that you may be seeing. So I think it's a very important area for further study.

Andrea Miyahira: Thanks. And so what are your next steps in this research area?

Stacy Loeb: Our next steps are doing a deeper dive on online misinformation. Because what we found as we were looking at all of these videos and websites is just that there is really a scary amount of misinformation about prostate cancer that's circulating. And it's really across the board, starting with everything like prevention of prostate cancer and content that is not evidence-based about prevention, as well as screening with a lot of posts that suggest that people have early symptoms of prostate cancer when that's really not the case. And anyone who thinks that you have to have symptoms to have prostate cancer may not get screened. We've also seen a lot of non-evidence-based content about treatment options for prostate cancer. So it really runs the gamut and we're very interested in studying next, what is the impact of exposure to online misinformation? How does this affect patients' decision-making? And how might this play a role in health disparities?

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

Stacy Loeb: Thank you so much.