Most Wanted Answers
Ms. Ruffing and others at her institution have studied what people are looking for when they go to the rheumatology section of the Hopkins website. That’s another way, in addition to office consultations, to assess more precisely what patients want to learn more about, she says.
“I think disease state materials are in high demand,” says Ms. Ruffing. “The other common questions from patients include those on diet and exercise. People want to know if there are lifestyle changes to control symptoms or improve how they feel—intervention in addition to medications.
“The anti-inflammation diet is very popular right now,” notes Ms. Ruffing. “Patients want to know, ‘If I modify my diet, how will this help?’”
Questions from Dr. James’ patients cover similar topics: “My experience is that patients often are seeking very practical advice about living with lupus—topics like managing fatigue, information on diet/exercise, handling depression, coping skills for chronic disease, etc.,” she writes in an email.
Other inquires are seasonal. “As soon as spring starts, we get a lot of hits on Lyme disease,” says Ms. Ruffing. “That’s hugely popular. We have several videos from tick bite prevention to signs and symptoms of Lyme disease to treatment.”
Patients want answers to general questions about the course of their diagnosed disease, says Ms. Ruffing. They ask, “What is the natural course? What happens in 10 years? What happens in 20 years? Is there a cure?
“Those are the kind of [answers] it would be great to have in more languages, [answers to] those frequently asked questions,” she adds.
Written content may work well for some patients, whereas others may prefer to watch patient education videos.
Bottom Line
Trustworthy patient education material derives from many sources, from well-known institutions to the experience and research of the individual rheumatologist. The challenge for patients can be knowing how to sift through questionable content more intended for marketing or promotion to find credible information that is nonbranded and as unbiased as possible.
“We all have our own inherent kind of biases, and I think the most important thing is to acknowledge this,” says Dr. Martin, “then offer people a choice of formats or depth of information, listen and give them the information they are looking for.”
Catherine Kolonko is a medical writer based in Oregon.
Helpful Websites
Here is a list of websites mentioned in this article or sponsored by disease-specific organizations or foundations. In addition, the National Institutes of Health offers Tip Sheets to help patients locate credible websites and evaluate health information sources.
