The Rheumatologist—December 28, 2012
“I didn’t have a Facebook page, I didn’t even know what a Facebook chat was,” says Jane Salmon, MD, who was one of the participants and is director of the SLE and APS Center of Excellence at HSS. “What surprised me was how simple it was.”
What surprised everyone was that approximately 250 people turned out for the chat, asking more than 65 questions. It proved so successful that another one focusing on lupus and pregnancy was conducted in October.
This past year, almost 87,000 people have participated in the hospital’s webinars, read its blog posts and Twitter feed, posted questions on its Facebook page, blog or twitter, sites, or watched its YouTube channel. Hungry for the latest information, they want—even demand—solid answers to their health questions. To meet their expectations, the hospital has begun launching Facebook chats, enabling people to connect with a variety of healthcare professionals who can address real concerns and real questions in real time.
Initially, Dr. Salmon expected participants to share complex, long descriptions of their frustrations regarding the side effects of their medicines. She was concerned about her ability to offer “satisfying answers” that would help them better manage their care and enhance, not interfere, with medical advice prescribed by their doctors.
“It’s helpful for patients to feel the freedom to seek advice because they’re going to do it even if we don’t give them permission,” she says, adding that to avoid patient confidentiality issues, participants only used their first names. “What was unique about our chat was that it included professionals from multiple disciplines. Each of us hears questions differently and these different responses to the same question help patients.”
She believes such chats underscore the value of rheumatologists. Some patients are treated by nephrologists, dermatologists, or hematologists—but not rheumatologists—since diseases like lupus can impact multiple systems. Facebook chats can help rheumatologists take ownership of specific diseases like lupus, she says, and by being accessible online to patients afflicted with these diseases, patients will understand they need to be observed by a rheumatologist.
Since this was the hospital’s first Facebook chat, each participating healthcare provider was given an instruction booklet. It offered short responses to frequently asked questions, related website links, and basic tips, such as how long their answers should be, how to keep them brief, language to use, and to identify the person they’re responding to so people know when their question is being answered, explains Elyse Bernstein, senior manager of public relations and social media at HSS, who developed the booklet.
“To facilitate the chat, the professional staff identified their specific areas of interest and types of questions they would like to address,” she says, adding that the transcript of the chat is archived on HSS’ blog so participants and those who could not attend can review the online conversation (www.hss.edu/onthemove). “I was the moderator,” Bernstein says. “As questions came in, I delegated them. Everyone had a laptop and typed their responses. We also had another staff person with an iPad to refresh the page.”
With any new technology, there is a learning curve. Bernstein says each chat must focus on a specific topic related to one disease. However, when coordinating future chats, she won’t invite as many experts. She believes fewer voices tend to minimize potential confusion among participants.
Likewise, she is considering posting a Facebook link to an online survey. Although she received feedback from lupus bloggers and advocacy groups like the Lupus Foundation who helped promote the event, Bernstein says, “It would be great to go back and get a deeper dive into what people felt. This way, we would get feedback that is very streamlined, focused, and gathered on one spot.”
Michael Lockshin, MD, a rheumatologist and professor of medicine and obstetrics and gynecology at HSS who participated in the chat, is also eager for constructive feedback. He says a critical analysis that focused on the chat’s mechanics or logistics would be useful. For example, would participants like an agenda beforehand? Was chatting with six people helpful or confusing? What should be done differently?
Despite their initial success, Facebook chats and other forms of social media still haven’t gained full acceptance in the medical community.
Unlike one-on-one social media or e-mail communications—especially nonencrypted e-mails—that often pose privacy issues, he says Facebook chats carefully lay out privacy protections for patients.
Considering all the patient benefits, Dr. Lockshin is looking forward to his next chat.
“When we first started doing this, we were stunned,” he says. “We had several doctors in the room and wondered whether we should have a movie [playing] inside the room because we would be so bored. We had so many questions, we were just overwhelmed and gratified that we could reach so many patients.”
Read the full story at the-rheumatologist.org.