Other Online Sources
The written word accompanied by pictures or other graphics remains a popular format for patient education materials. Several other trustworthy websites exist where patients can further explore a medical concern or topic (see the sidebar, opposite).
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Ms. Ruffing recommends the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), because it is a good source for nonbranded educational material. “NIAMS has publications you can order,” says Ms. Ruffing. “The materials are free, and it will ship the publications to you at no charge.” Alternatively, you can download and print the information from a computer.
“It has a fairly extensive number of publications,” says Ms. Ruffing about the NIAMS website. “They cover everything from gout to vasculitis to scleroderma to dermatologic conditions. The list of [materials] for the rheumatic diseases is pretty thorough.”
The Arthritis Foundation, Lupus Foundation of America and other disease-specific organizations also dedicate portions of their websites to educating patients and answering their questions. These websites, like the newly redesigned lupus.org, often incorporate social media elements that empower patients to learn from each other through stories of challenges and triumphs of living with a disease.
Another reasonable source is UpToDate, an online physician database that hospitals across the country invest in, says Dr. Martin. It is widely available to physicians, universities and hospitals; some doctors have the medical resource software embedded within their electronic medical record systems. “It has information to educate doctors on many topics, but it also has information on patient education,” says Dr. Martin, who recommends the section called Beyond the Basics for those patients who seek a deeper dive into their education quest.
“So if you were going to structure a way to give information to people, you might start with the ACR’s [patient fact sheets],” suggests Dr. Martin. “That’s very general—first blush, appetizer. Then you have some conversation around it. Then you might dispense to the patient one of these two layers of information, which you found on UpToDate.”
Patient education materials presented in languages other than English are also available, though likely not as ubiquitous or prevalent. The ACR has Spanish translations. The Mayo Clinic offers a wide variety of rheumatoid arthritis and other disease state materials on its foreign-language sites, says Ms. Blahnik.
At HSS, Dr. Lockshin and colleagues provide written, online and conference discussions in Spanish, Mandarin, Cantonese and other languages, he says. “In New York that mostly means Arabic, Russian, Creole/Haitian French,” notes Dr. Lockshin in an email. “This sort of service can be one-on-one translation or talks and workshops, usually in the communities with large numbers of non-English-speaking members, with simultaneous translation and Q&A from an English-speaking presenter.”
Cochrane Reviews is good source for curious patients looking to increase their knowledge on various aspects of rheumatic disease, says Dr. Martin. Its library has a series of reviews and some metanalysis on specific topics, and it provides plain language summaries for most of the reviews, as well as Spanish language materials, he says.
He and his colleagues involved in creating medication decision aids for patients often use Cochrane Reviews as a source. “Most people who create decision aids use the Cochrane Reviews as one of the evidence legs.”
During the 2015 National Hispanic Heritage month, NIAMS launched a Spanish-language website, where Spanish speakers can access free health information on conditions of bones, joints, muscles and skin. The NIAMS site also includes materials in three different Asian languages: Chinese, Korean and Vietnamese.