By Daniel Hernandez, MD, CreakyJoints and Global Healthy Living Foundation
The global pandemic has shined a much-needed spotlight on the health disparities in Hispanic communities. For years, Hispanic communities have faced inequities in many aspects of healthcare — from finding health education, being health literate, accessing healthcare, and underrepresentation in clinical research.
As patients become increasingly engaged in managing their own healthcare, it is critical to ensure key stakeholders from all areas of healthcare ramp up efforts to close gaps in care. This rings especially true as Hispanics are disproportionately affected by some of the leading causes of death and illness, including heart disease, cancer, diabetes, and more, compared to non-Hispanic whites. Even when disease prevalence is lower than that of other populations, the effects can be exacerbated due to the disparities in care access, lack of health insurance, and more. For example, the Centers for Disease Control and Prevention estimates that 4.4 million Hispanic Americans live with some form of diagnosed arthritis. While the prevalence of arthritis among Hispanics is less than non-Hispanic whites, the former are nearly twice as likely to become disabled from arthritis and experience joint damage.
Various stakeholders in healthcare, including government, advocacy and patient community groups, pharmaceutical and other life sciences companies, and clinical research organizations, recognize the need to address disparities among Hispanic communities. That’s why it is important to try to better understand ways to help Hispanics overcome these differences in outcomes.
Addressing Dangerous Misinformation
The popularity of social networks as primary news source channels may seem common, but it tends to be significantly higher among Hispanics compared to other populations. From marketing data we also know that more than half (52%) of the U.S. Hispanic population was predicted to use the messaging app WhatsApp in 2019 — a significantly higher rate than that of other populations. The platform’s Hispanic user base has rapidly grown to 32 million individuals within the last few years, making it more popular among this group than Twitter and other social media platforms. According to Pew Hispanic research, 71% of Hispanics obtain health information through their social networks and 79% of them follow through and act on the information. This would be a positive scenario if this information was accurate and led to better health outcomes for many. But the general health information available for the Hispanic community online heavily leans toward dangerous misinformation, which has led to low levels of diagnosis and a growing knowledge gap.
New research from CreakyJoints Español further demonstrates how health misinformation can both proliferate and impact how people understand disease. Recently presented data shows 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 660,000). An analysis of the text suggests Spanish-language RA misinformation videos focus on a simple explanation with a (false) 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 was presented virtually at the 23rd Pan-American Conference of Rheumatology (PANLAR) 2021, August 12-15, 2021.
Enhancing Health Literacy For Arthritis
Understanding the dangerous effect that online health-specific misinformation may cause to the many who take it in as factual and accurate, we at CreakyJoints Español are tackling this issue head on for the millions in the Hispanic community living with various forms of arthritis. Our site and social media channels provide Hispanic patients with arthritis education, support, advocacy, and research informed by science and healthcare experts.
We believe that if we improve the volume and accessibility of credible health information, people living with arthritis will be able to both manage their disease better and educate their family, friends, colleagues, and others about their disease and what to expect from its progression. Anecdotally, we know that many Spanish-speaking families regularly flip between using English and Spanish, particularly when different generations have different levels of fluency. Having our tools, resources, and support program available in both English and Spanish allows people to educate themselves and others in the language that is most comfortable.
COVID-19 dramatically affected new patient diagnosis rates and ongoing patient care, especially as provider and research sites experienced closures or limited accessibility. Telemedicine quickly became the way to continue care safely, wherever patients may be. However, while everyone benefitted from increased access, the Hispanic community still faced barriers to reaching physicians and other healthcare providers, in part because of the limited access to “language concordant care for linguistically underserved populations.” The UCLA Health Center for the Study of Latino Health and Culture points out that Hispanic patients are among those, “vulnerable patients…the ones that have been unable to ‘wall themselves off’ from infection because of their jobs in agriculture, sanitation, and front-line retail, and because many rely on public transportation, and they are already dying in disproportionate numbers.”
Among other recommendations, UCLA Health recommends that Hispanic patients, particularly those who converse primarily in Spanish or switch between Spanish and English regularly, might benefit from extra guidance and technological troubleshooting to take full advantage of telehealth services, such as virtual visits with doctors, for those with limited technological literacy. It’s also important to encourage younger generations to support older adults in the family and community to increase uptake as well.
Notably, we can study the use of telehealth in decentralized studies, using online research registries to better understand patient satisfaction with different types of telemedicine visits, and to understand patient experiences and perceptions of access to care and telemedicine, and patients’ preferences for next visit type.
CreakyJoints Español also last fall launched eRheum.org in Spanish to provide stepwise guidance to help arthritis patients understand and prepare for a telehealth appointment. This includes a breakdown of how telehealth works and tips for virtual appointments.
Power Of Diversifying Research
The lack of diversity in clinical trials has been a longstanding, much studied issue. Right now, because of the pandemic, the healthcare industry has a renewed focus to improve diversity in clinical trials and ensure those who are underrepresented but disproportionately affected, such as the Hispanic and BIPOC communities, are sufficiently included in important clinical research that ultimately affects their health. More than ever, communities of color have to be involved in critical research.
The industry as a whole continues to look for ways to appropriately reach the Hispanic communities to provide information about trials and research that affect them and to build trust that their participation is for the purpose of bettering patient health outcomes. Launched during the pandemic, the Autoimmune COVID-19 Project, a longitudinal study for patients with multiple sclerosis, arthritis, Crohn’s and colitis, or vasculitis, has tracked the evolving impact of the COVID-19 pandemic on patients living with these conditions. The study, from the start, included research opportunities in English and in Spanish, much of which has already been presented at medical meetings and published in peer-reviewed journals.
Similarly, CreakyJoints’ ArthritisPower Research Registry (which leads the Autoimmune COVID-19 Project) actively recruits people living with joint, bone, and inflammatory skin conditions, as well as arthritis and rheumatological manifestations of gastrointestinal-tract (GI) conditions to participate in patient-reported outcomes research (in English and Spanish). The ArthritisPower app, created by CreakyJoints and University of Alabama at Birmingham, partners with researchers at major universities and research organizations to understand the impact of disease, asking the questions that go beyond clinical lab data. For example, a recently published studied analyzed the concerns women with rheumatoid arthritis (RA) had about reproduction and breastfeeding while on (or off) biologic medications. An ongoing study is evaluating associations between biometric sensor data, physician-derived data, and electronic patient-reported outcomes (ePROs) over time. Another study is assessing the psychoeducational needs, barriers, and facilitators of ArthritisPower members with rheumatoid arthritis when they are contemplating a change in treatment regimen. These are just a few of the dozens of PRO studies that help inform researchers and providers about the experience of arthritis.
The ArthritisPower app also functions as a disease experience tracker. People with arthritis and related conditions can track their experience of symptoms and treatment, and then share that information with their doctors electronically. When people provide their informed consent, some of their deidentified data also gets donated to the registry.
By driving patient-reported data and encouraging Spanish-speaking people living with arthritis to participate, clinical researchers can design investigations and develop research strategies based on genuine patient needs, as provided by the patient, for the patient. For the Hispanic community, furthering research that benefits others who live with similar diseases and debilitating symptoms creates immense potential to help shift the care paradigm.
The industry has long recognized the critical need to address challenges to care for the Hispanic communities. But now, we can see the tides are changing, and there is tangible action to ensure Hispanic Americans are reached in ways that make the most sense culturally. Just as government, advocacy groups, private companies, and others push the needle further in breaking down healthcare barriers for the community, there is power in staying informed and in proactively playing a role in our own health. It’s encouraging to see the momentum as more in the community are equipped with the appropriate tools and resources to create better health outcomes.
About The Author:
Daniel Hernandez, MD, is director of medical affairs and Hispanic outreach at the Global Healthy Living Foundation and CreakyJoints/CreakJoints Español. He graduated with a biology degree from the University of Texas in San Antonio and later graduated medical school from the Universidad Autonoma de Guadalajara. He can be reached at email@example.com.