CreakyJoints Espanol: Factual vs Misinformation YouTube Spanish-Language Rheumatoid Arthritis Videos

Rheumatology Network sat down with Daniel Hernandez, MD, and Esteban Rivera to discuss the study, “Social Listening: Factual vs. Misinformation YouTube Spanish-Language Rheumatoid Arthritis Videos.” The findings were presented at the 23rd Pan-American Conference of Rheumatology (PANLAR) 2021, which ran from August 12-15. Hernandez is Director of Medical Affairs and Hispanic Outreach at Global Healthy Living Foundation/CreakyJoints and Rivera is a Data Analyst at Global Healthy Living Foundation.

Global Healthy Living Foundation is a 501(c)(3) non-profit working to improve the quality of life for people living with chronic illnesses. CreakyJoints is a support, education, advocacy, and research organization for people living with arthritis and rheumatic disease. For more information, visit CreakyJoints and CreakyJoints Espanol.

Rheumatology Network: Why is misinformation more concentrated in certain groups, such as the Hispanic community, on conditions like rheumatoid arthritis and other rheumatic diseases?

Daniel Hernandez, MD: The simple, although not easy, answer is that underrepresentation leads to lackluster outreach. These conditions are confusing to begin with. So now you add to that, that it's been hard for Spanish-speaking communities to find comprehensive health information and education historically, especially in Spanish. They don't know where to find this help that will aid them in understanding their own experience of the disease or explaining it to family and friends. So, all of these issues within our community creates a perfect breeding ground for misinformation to spread like wildfire.

RN: Why do you believe the videos containing misinformation had at least 2 times the views of factual videos?

Esteban Rivera: Going off of what Daniel said, these underrepresented communities are seeking out information from alternative sources, which are not their physicians, whether that's due to lack of trust, structural racism, or many other factors. Once they're on these types of platforms, there's a sort of structure in place that leads them within their own communities to these clickbait or “quick simple fixes” videos with inaccurate information. They often have titles which are extremely attractive to people. Maybe they're novel, or it's something that you see and it'll be immediately helpful to you. They've promised cures right off the bat, whether that be in the title or the content within the video itself. And other videos, say with factual information, don't have that similar type of style.

RN: What are the dangers of creating a cycle where more popular misinformation videos impact YouTube's algorithm and, in turn, offer more videos with a similar message more often?

ER: Within YouTube itself, and even other social media platforms, there really is no accountability. Anybody can post this inaccurate medical information and they really don't see any consequences for it. In fact, it actually rewards them at times, like in this situation. With hundreds of 1000s of people accessing these most popular videos, a lot of crucial medical information is left up to interpretation of the viewer. And we know that that can go in many different directions, whether in the positive or negative direction. And the goal of our study was to bring attention to this so that the Spanish-speaking community is more aware of this and is able to distinguish these misinformation videos, or inaccurate information in general, with information which is based on clinical research.

RN: What were some of the themes that emerged from analysis for both factual and inaccurate videos?

DH: We utilized a few tools in order to analyze these videos, One of the first things that we saw, and that was alarming to us, is that the videos containing misinformation had at least 2 times the views of factual videos. We did text analysis within the comment sections and we started seeing what type of information we could gather other than just them being so popular. So, we saw that these misinformation videos focused on simple explanations with a promise for a cure. The factual videos focused more on the technical explanation of the disease. And within this section (the factual videos), the analysis within the comment section was very negative and showed sentiments of fear that were very predominant throughout. So that's something that we found very interesting. Another thing that we saw was that non-pharmacological treatments were being portrayed as the natural, alternative treatments, and this was rampent throughout. This wasn't only seen on misinformation videos, but also on the comments section of the factual videos, which was something that we didn't expect to find. One other thing that we found very interesting was that within the misinformation videos we never saw, although these were educational pieces for rheumatoid arthritis, we never saw the word rheumatoid arthritis written out in the comment section for misinformation videos. But we did see that for the factual videos. So that infers a type of educational value once a user finds a factual video. But unfortunately, as I previously mentioned, it's more difficult than finding a misinformation video.

RN: You mentioned natural remedies. Why do you believe there are more natural remedies for rheumatoid arthritis pushed in both videos, although it is more prevalent in the misinformation videos?

ER: I mean, when it comes down to it, social media platforms such as YouTube, reward engagement. And it doesn't matter what people are coming for, there's no differentiation between good views or bad views. If there's incentive for an author to push clickbait or push content, even if it doesn't contain accurate information, they will go ahead and do that. And if I can just clarify one thing, we didn't actually see misinformation within the videos with accurate information, we saw it in the comment section, as Daniel mentioned. So that kind of tells its own story where the viewers are interacting with one another. And there's even misinformation spreading in there, even though the actual content of the video was completely factual and completely based off clinical research.

RN: What differentiates the factual videos analyzed from the misinformation videos analyzed?

DH: Other than the things that we previously mentioned, I think the thing that that just differentiates them completely is this popularity with them and how they create a vicious cycle of more and more videos, because they're so popular. So, what we want to highlight here is that there has to be some way of stopping this. And we would like to find that that answer, but we unfortunately don't have that answer right now. We would like to work with the those in charge in order to figure it out.

RN: Is there anything else you would like our audience to know before we wrap up?

DH: Yes. Thank you so much for this and we'd like to invite those watching to share our pages with your communities. Everything that we create is evidence-based. Everything is validated by our team of physicians and scientists. You can find all of our different links to CreakyJoints and CreakyJoints Espanol. We have guides for telemedicine at GHLF.org.