Background/Purpose: The SLE-APS Center of Excellence at Hospital for Special Surgery (HSS) uses Facebook chats as a means to increase awareness, reach a wider audience, allow for interaction between patients and health care providers, and answer patients’ questions about lupus.  To date, three chats have been completed.  These lupus Facebook chats help to educate patients about their disease and the importance of maintaining relationships with their rheumatologists.   

Objective: To determine whether collaboration with a disease-specific foundation increases patient awareness of and participation in lupus Facebook chats.

Methods: Three chats have been completed.  The first two were promoted through advertising and promotion on the 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 and they used similar advertising.   Participants were instructed to like the HSS Facebook page and post their questions.  A panel of 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” (www.hss.edu/onthemove).

Results: The first chat (May 2012) focused on lupus and medications.  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.  HSS reported 14 twitter mentions and five retweets.  The HSS page received 30 new likes on the day of the chat, and 21 users liked the chat post.  The second chat (October 2012) discussed lupus, pregnancy, and reproductive health. There were 2,203 people who saw the chat with 25 questions and comments from 12 users.  The promotional Facebook posts were shared 81 times and eight users retweeted. The HSS page received 34 new likes the day of the chat.  In May 2013, HSS collaborated with the SLE Lupus Foundation for the third chat on lupus and general health.  6,624 people saw the chat. The HSS Facebook page received 332 new likes on the day of the third chat.  The month’s daily average was 34 likes.  The chat post drew 78 likes.  There were 123 participants representing six countries and 28 States.  Participants posted 162 questions and comments with 61 answered during the hour.  The promotional Facebook posts before the chat (from HSS and the S.L.E. Foundation) were shared 288 times.   The S.L.E. Lupus Foundation tweeted an additional 18 times in promotion of the chat. 

Conclusion:  Participation level was higher when the topics were more general.  Lower participation in the second chat may relate to the private nature of the topic and concerns of privacy.  Collaboration with the SLE Lupus Foundation increased patient awareness of the chat and participation.  This experience suggests that partnering with disease-specific community organizations can enhance delivery of health education programs.  More data from participants are needed to determine how they learned about the chat, why they joined, and how to increase comfort in asking difficult questions in an open forum.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/utilizing-facebook-chats-to-convey-health-information-to-lupus-patients-at-the-systemic-lupus-erythematosus-antiphospholipid-syndrome-center-of-excellence-at-hospital-for-special-surgery/