Study Shows How Social Media Engages People with Chronic Diseases

San Diego—October 28, 2013

Using Facebook chats to convey health information is becoming more common. A study at Hospital for Special Surgery (HSS) in New York City set out to find the best way to boost participation in the chats to raise awareness of lupus, an autoimmune disease.

Specifically, investigators at HSS wanted to see if collaboration with a community-based lupus organization would increase patient awareness and participation. They found that the number of people participating in the chat tripled when the hospital joined forces with the S.L.E. Lupus Foundation to publicize the chat.

The study, titled, “Utilizing Facebook Chats to Convey Health Information to Lupus Patients at the Lupus-Antiphospholipid Syndrome Center of Excellence at Hospital for Special Surgery,” was presented at the American College of Rheumatology/Association of Rheumatology Health Professionals Annual Meeting on October 28 in San Diego.

The Lupus Center of Excellence at Special Surgery uses Facebook chats to raise awareness, reach a wider audience, allow for interaction between patients and health care providers, and answer patients' questions about lupus.  The chats help to educate patients about their disease and the importance of maintaining relationships with their rheumatologists.

“The Facebook chats provide a new venue to get information from rheumatologists and other health professionals who understand this complex disease. Lupus patients are hungry for information, and with social media, we can address their specific concerns in real time,” said Jane Salmon, M.D., director of the Lupus Center of Excellence and senior author of the study.

Three chats have taken place to date. "The first two were promoted through advertising and promotion on HSS's Facebook and Twitter accounts, targeted pitching of lupus bloggers and awareness groups, word of mouth, and by flyers. For the third chat, HSS collaborated with the S.L.E. Lupus Foundation, using similar advertising strategies," said Elyse Bernstein, assistant director of Public Relations and Social Media at Hospital for Special Surgery.

Participants were instructed to "like" the HSS Facebook page and post their questions. A panel of HSS rheumatologists, an obstetrician-gynecologist, social workers, physical therapists, nutritionists, and a rheumatology nurse practitioner responded to as many questions as possible over one hour. Remaining questions were distributed to the experts for answers and turned into a blog series on "HSS on the Move" (http://www.hss.edu/playbook).

The first chat in May 2012 focused on lupus and medications. A total of 2,280 users saw the chat post, with 60 questions and comments from 20 users. Promotional Facebook posts before the chat were shared 247 times. The HSS Facebook page received 30 new likes on the day of the chat, and 21 users liked the chat post.

The second chat in October 2012 discussed lupus, pregnancy and reproductive health. This time, 2,203 people saw the chat, with 25 questions and comments from 12 users. The promotional Facebook posts were shared 81 times. The HSS Facebook page received 34 new likes on the day of the chat.

In May 2013, HSS collaborated with the S.L.E. Lupus Foundation to publicize the third chat on lupus and general health.  This time, a total of 6,624 people saw the chat. The HSS Facebook page received 332 new likes on the day of the chat, compared with the daily average for the month of 34 likes. The chat post drew 78 likes.

For this chat, 123 participants representing six countries and 28 states posted 162 questions and comments.  The promotional Facebook posts before the chat (from HSS and the S.L.E. Foundation) were shared 288 times.

In conclusion, when the hospital’s Lupus Center joined forces with the S.L.E. Lupus Foundation, awareness of the chat and participation soared by about 200 percent. Participation was also higher when the topics were more general. Lower participation in the second chat may be related to the private nature of the topic and privacy concerns.

“The findings suggest that collaboration between health care providers and disease-specific community organizations can enhance patient participation and increase our ability to educate patients about staying healthy,” said Dr. Salmon.