“What I recommend depends very much on what questions patients ask,” says Dr. Lockshin. “The chat rooms and ‘ask the doctor’ sessions work best when the questions are about atypical or rare manifestations of illness, since answers can be more specific to the individual’s questions.”
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Explore This IssueMay 2019
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It is important to keep the individual person in mind when recommending or providing patient education, says Dr. Martin. He considers what would be of interest and salient to each patient. “I will introduce people to [materials], then show them that I have a couple of different options [and ask], ‘Does any of this interest you?’” says Dr. Martin. “Then they decide what detail of information they want to take home with them to read.”
In addition, Dr. Martin’s office uses Santovia—a proprietary patient education platform for electronic medical records systems—to populate short videos and articles to his practice’s online patient portal for easy browsing. “They can graze and see what is important to them right now.”
Dr. James says she has referred patients to the Mayo Clinic for educational material but in general does not recommend one specific institution. She likes many articles featured in the ‘living with lupus’ section, a website affiliated with her research center, which also has an online education portal with information about clinical trials oriented to potential participants from under-represented communities.
Written content may work well for some patients, whereas others may prefer to watch patient education videos. Johns Hopkins’ website has both videos and downloadable written education sheets covering the main points about side effects of prescribed drugs, says Victoria Ruffing, RN-BC, the director of patient education at the Johns Hopkins Arthritis Center and adjunct faculty at the Johns Hopkins School of Nursing.
At the 2018 ACR/ARHP Annual Meeting, Ms. Ruffing and her colleagues showcased the newly created RheumTV, which offers a collection of videos on rheumatic conditions designed so patients can choose to watch one at a time or in a series. Rheumatologists who visited the display commented they had been trying to find videos and downloadable information to give patients, she says.
“People came by the booth and looked at what we had, and they were thrilled,” says Ms. Ruffing.
New videos are created every month or so to meet requests and inquiries from rheumatologists at Hopkins, but their reach extends beyond the hospital, says Ms. Ruffing. Rheumatology colleagues across the U.S. have remarked to Ms. Ruffing that they have used a series of videos from the Hopkins site to teach patients how to inject a biologic drug, she says.
“There are directions on our website on how to self-inject individual medications, which is helpful for some people,” says Ms. Ruffing. “For our own patients, even if we have taught them in person, we can send them home and say, ‘If you feel nervous, you can watch this video.’”
The ACR’s Simple Tasks campaign, which raises awareness about rheumatology, offers a variety of videos to inform patients about such topics as living with lupus and myths about rheumatic diseases. The website also promotes advocacy for patients living with rheumatic disease.