FOR IMMEDIATE RELEASE
Poster Presented at Pan-American Conference of Rheumatology (PANLAR) 2021
UPPER NYACK, NY (August 12, 2021) – Today CreakyJoints Español, the digital, international patient community for people with all forms of arthritis and part of the Global Healthy Living Foundation, reports that of the three most viewed factual and three most viewed inaccurate Spanish-language videos about rheumatoid arthritis (RA) on YouTube, the videos containing misinformation had at least two times the views of factual videos (1.45 million versus 660k). An analysis of the text suggests Spanish-language RA misinformation videos focus on a simple explanation with a promise for a cure whereas Spanish-language RA factual videos focus on the technical explanation of the disease, which fosters negativity and fear in the comments section. This analysis is being presented virtually at the 23rd Pan-American Conference of Rheumatology (PANLAR) 2021, August 12-15, 2021.
According to Pew Hispanic research, 71 percent of Hispanics obtain health information through social networks and 79 percent of them follow-through and act on the information. Unfortunately, the general health information available for the Hispanic community online is often times dangerous misinformation—leading to low levels of diagnosis and a growing knowledge gap.
“Within Hispanic communities, it is vital to help patients overcome existing barriers and better engage in their healthcare, especially given that we are disproportionally impacted by many debilitating health conditions, including arthritis” said co-author Esteban Rivera, MS, Data Analyst, Global Healthy Living Foundation. “Our study confirms what we knew anecdotally, that misinformation is appealing because it’s packaged as a solution or cure, despite there being no cure for arthritis.
CreakyJoints Español remains committed to fighting misinformation by being a source of credible, evidenced-based information about all forms of arthritis through our website, social media platforms (WhatsApp, Instagram, Facebook) and our ArthritisPower Español Research Registry, which aims to get more Spanish-speaking people involved with tracking their experience of disease symptoms and treatment and participating in research.”
The Center for Disease Control and Prevention estimate that 4.4 million Hispanic Americans live with some form of diagnosed arthritis, the prevalence of arthritis among Hispanics is actually lower than non-Hispanic whites. Yet, Hispanics are more than twice as likely to become disabled from arthritis and experience joint damage.
Triplet Word Combinations Peddle Promises Over Facts
In the poster titled, “Social Listening: Factual vs. Misinformation YouTube Spanish-Language Rheumatoid Arthritis Videos,” study authors explored why videos with misinformation about RA appeal to Spanish speakers using the three most viewed YouTube videos containing factual information and the three most viewed YouTube videos containing primarily inaccurate information about RA. The text from each video’s comment section were analyzed using a frequency analysis and sentiment analysis conducted by comparing the words to their pre-defined underlying emotion from a noted sentiment dictionary. Then, with those definitions, researchers ranked the most common emotions from highest to lowest for each video, with specific themes emerging and differentiated the tones of the factual videos against the inaccurate videos.
The most viewed misinformation videos claim to have novel cures for RA in the title. The most common phrases, often found in triplet combinations, in the comments section promote non-pharmacological treatments that are deemed as ‘natural treatments’ and suggest these as replacements to pharmacological treatments. In the misinformation videos, viewers responded to phrases such as “tratamiento anti-artritis (anti-arthritis treatment), “poseen propiedades medicinal (possesses medicinal properties)” or “tratamiento natural especializado (natural specialized treatment).” One of the most popular misinformation videos with overall positive or trusting sentiment results, suggests that arthritis is a single disease (not true) that is treated incorrectly by physicians through pharmacological treatments (misleading) while promoting that viewers, instead, should focus on their diet, vitamins, and deep breaths, a regimen described in the book being sold by the video’s personality.
It was also noted that all top three factual videos presented RA in a complex way, using more technical and high-level language than the misinformation videos. Similar to the most viewed misinformation video, the most common phrase in the comments section of the most viewed factual video also discusses a natural treatment for RA. Study authors observed that the factual videos were the only ones to have the word ‘rheumatoid arthritis’ as a common phrase in the comments section, suggesting that there may be evidence that the content of the video is specific in talking about the disease itself and not other, misinformed topics surrounding the disease.
“It’s frustrating that misinformation videos, whose titles promise a cure or a novel treatment for RA have more engagement by users because that increases YouTube’s algorithm to suggest these videos to others and, thereby, increase their reach compared to factual RA videos,” added co-author Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach for Global Healthy Living Foundation. “Our study highlights the urgent need to drive Spanish-speaking communities to credible sources of information, but also sadly underscores how easily misinformation and “fake news” spreads with the help of social media platforms with few oversights in place.”
CreakyJoints® Español is a digital community for millions of arthritis patients and caregivers worldwide who seek education, support, advocacy, and patient-centered research. We represent patients in English and Spanish through our popular social media channels, our websites, and the 50-State Network, which includes more than 1,600 trained volunteer patient, caregiver, and health care activists.
Part of the Global Healthy Living Foundation, CreakyJoints also has a patient-reported outcomes registry called ArthritisPower® (ArthritisPower.org), which includes tens of thousands of consented arthritis patients who track their disease while volunteering to participate in longitudinal and observational research. CreakyJoints publishes the popular “Raising the Voice of Patients” series, which offers downloadable patient-centered educational and navigational tools for managing chronic illness. It also hosts PainSpot (PainSpot.org), a digital risk-assessment tool for musculoskeletal conditions and injuries, and eRheum (eRheum.org), for telehealth and virtual-care support. All programming is free, always. For more information and to become a member, visit CreakyJoints.org and CJES.org (Spanish language).
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