The Centers for Disease Control and Prevention is also a trustworthy source for information available in a number of different languages. Information on diseases and conditions comes in various formats available for sharing and downloading.
The ACR provides a wide variety of resources for patient education. “We offer more than 100 patient fact sheets regarding individual autoimmune/rheumatic conditions and various treatments that are understandable at a sixth grade reading level through our website,” explains Mohammad Ursani, MD, a private practice rheumatologist in The Woodlands, Texas, who serves as chair of the ACR Communications and Marketing Committee. “In addition to print materials, we have created informational whiteboard videos, infographics, social media graphics and fact sheets on such popular conversations as pregnancy and rheumatic disease, cannabis use for pain management, and COVID-19 and other vaccine information.”
The materials from the ACR are distributed primarily through electronic media (e.g., blog posts and newsletters) and educational videos. Rheumatology professionals and patients can also print fact sheets and infographics directly from the website. “Thus far, we have translated our disease and treatment information section into Spanish,” Dr. Ursani says.
The Lupus Foundation of America produces patient education materials in the three most common languages in the U.S.—English, Spanish and Chinese.
“Approximately 20% of inquiries to our health education specialists are in Spanish, so we know a significant need exists among people with lupus for Spanish language resources,” says Melissa G. French, MS, content director at the Lupus Foundation of America, Washington, D.C. “Our Spanish-speaking health education specialists provide answers to people’s questions in Spanish.”
Videos from the Lupus Foundation of America provide different kinds of information. Some videos cover the basics of understanding lupus, while others provide more in-depth information on the disease. “A number of our videos offer tips and strategies on living better with lupus. We also have videos explaining many of our programs, such as SELF—Strategies to Embrace Living with Lupus Fearlessly, our online self-management tool—and our health education specialists, as well as recordings from our education programs, Lupus & You.
“Finally, we also work with people living with lupus to create videos about their experiences and to highlight their resilience. All of our videos are designed to educate, inform and connect people with lupus and their caregivers,” Ms. French explains. “We also produce one to three Spanish-language episodes of our podcast, The Expert Series, every year,” she adds.