Currently submitted to: JMIR Research Protocols
Date Submitted: Aug 4, 2019
Open Peer Review Period: Aug 4, 2019 - Sep 29, 2019
(currently open for review)
Lupus patients on Twitter: Expressed symptoms and attitudes toward using the platform for healthcare engagement
Lupus is a complex autoimmune disease that is difficult to diagnose and treat. It is estimated that at least 5 million Americans have lupus, with more than 16,000 new cases of lupus being reported annually in the U.S. Social media provides a platform for patients to find rheumatologists, peers, and build awareness of the condition. Researchers suggested that the social network Twitter may serve as a rich avenue for exploring how patients communicate about their health issues. However, there is a lack of research about the characteristics of lupus patients on Twitter and their attitudes toward using Twitter for engaging them with their healthcare.
This study has two objectives: (1) to conduct a content analysis of Twitter data published by users (in English) in the U.S. between 9/1/2017 and 10/31/2018 to identify patients who publicly discuss their lupus condition and to assess their expressed health themes, and (2) to conduct a cross-sectional survey among these lupus patients on Twitter to study their attitudes toward using Twitter for engaging them with their healthcare.
This is a mixed-methods study that analyzes retrospective Twitter data and conducts a cross-sectional survey among lupus patients on Twitter. We will use Symplur Signals, a healthcare social media analytics platform, to access the Twitter data and analyze user-generated posts that include keywords related to lupus. We will use descriptive statistics to analyze the data and identify the most prevalent topics in the Twitter content among lupus patients. We will further conduct self-report surveys via Twitter by inviting all identified lupus patients who discuss their lupus condition on Twitter. The goal of the survey is to collect data about the characteristics of lupus patients (e.g., gender, race/ethnicity, educational level) and their attitudes toward using Twitter for engaging them with their healthcare.
This study has been funded by the National Center for Advancing Translational Science (NCATS) through a Clinical and Translational Science Award (CTSA) award. The Institutional Review Board at the University of Southern California (HS-19-00048) approved the study. Data extraction and cleaning are complete. We obtained 47,715 Twitter posts containing terms related to “lupus” from users in the U.S. published in English between 9/1/2017 and 10/31/2018. We will include 40,885 posts in the analysis. Data analysis will be completed by the end of 2019.
The data obtained in this pilot study will shed light on whether Twitter provides a promising data source for garnering health-related attitudes among lupus patients. The data will also help to determine whether Twitter might serve as a potential outreach platform for raising awareness of lupus among patients and healthcare providers and implementing related health education interventions. Clinical Trial: N/A
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