“For us, social media is a way for our patients, their families, researchers, and physicians to interact,” says Elizabeth Trocchio, director of marketing at the Sjögren’s Syndrome Foundation. “Being diagnosed with a disease few people have heard of, and few can pronounce, is scary. Sjögren’s is not a well known disease, which makes getting accurate information out in a timely manner even more important.”
Trocchio notes that the foundation uses social media like a virtual support group for patients online. This can be important in some of the relatively rare diseases where there may not always be enough interested people to support local groups. Even if hometown support exists, some feel more comfortable in SM situations when compared to in-person interactions.
Wheat and Chaff
Tongue-in-cheek insurance company commercials not withstanding, there is no requirement that only true information be placed on the Internet. As more patients turn to social media as an adjunct to talking with their healthcare providers, what kinds of things should a rheumatologist know to help guide them?
“To be able to answer the questions patients may have, it behooves the doctor to be familiar with what social media is available for the diseases they treat,” says Chris Collins, MD, program director for the division of rheumatology at Washington Hospital Center in Washington, D.C. “They should have a handful of resources that they have vetted and feel are accurate to give to their people.”
He suggests that the major disease-specific foundations such as the Arthritis Foundation and Sjögren’s Syndrome Foundation are good places to start. Many of the major medical centers may have Facebook pages or Twitter feeds with good information.
Even organizations that have not traditionally been patient focused are finding that social media connects them with patients as well as healthcare professionals. “A little over three years ago, the ACR began using social media to engage various groups of people,” says Erin Latimer, director of public relations for the College. “We quickly learned that we weren’t just engaging in conversations with our members, but we were often engaging with patients. In fact, the majority of our social media followers are currently patients and caregivers, which gives the ACR a unique opportunity increase the value of rheumatology among patients, provide helpful information and resources, and offer ways for our members to communicated with patients—and each other—through the ACR’s social media outlets.”
