Article type
Abstract
Background: Social media is increasingly being used as a platform where the public seek and share health information: however, its validity as evidence is not without issues. In response to calls for research to better understand Topical Steroid Withdrawal Syndrome (TSWS), a medically contested condition, we developed an Evidence Gap Map (EGM) and, in addition, to traditional peer-reviewed literature, used social media evidence to capture the lived experience of TSWS.
Objectives: To discuss the considerations and challenges of including social media evidence in an EGM.
Methods: Blogging sites - Wordpress, Medium and Blogspot - were searched in October 2022; Instagram and Reddit were searched for the 100 most recent posts on specific dates in February 2023. Blog titles, Instagram and Reddit posts were screened for relevance by two reviewers. EPPI Reviewer was used for coding, data extraction and generation of the interactive EGM.
Results: A key challenge was the amount of social media available on TSWS and how we could contain it; other important considerations included the ethics of using publicly available internet data, the accuracy and reliability of what is shared, the ephemeral nature of social media data and how people using social media are a self-selecting sample. It was not feasible to map all social media posts with #topicalsteroidwithdrawal, so we chose to sample Instagram and Reddit posts and simulate ‘real-world’ Instagram and Reddit viewing behaviour, by sampling between specific dates. Blogs or social media posts were included if they described any aspect of the experience of living with TSWS. Screening presented us with cases where individuals had a self-diagnosis of TSWS and were unsure whether their symptoms were TSWS, which required us to make judgements on the accuracy of their accounts. We also encountered how transient social media data is with some of our selected Instagram and Reddit posts removed after inclusion.
Conclusions: The strength of including social media in this EGM was that it highlighted research topics that need greater attention from academics and clinicians. It is a methodological innovation in EGMs and sharing some of the issues encountered may provide guidance for using social media.
Objectives: To discuss the considerations and challenges of including social media evidence in an EGM.
Methods: Blogging sites - Wordpress, Medium and Blogspot - were searched in October 2022; Instagram and Reddit were searched for the 100 most recent posts on specific dates in February 2023. Blog titles, Instagram and Reddit posts were screened for relevance by two reviewers. EPPI Reviewer was used for coding, data extraction and generation of the interactive EGM.
Results: A key challenge was the amount of social media available on TSWS and how we could contain it; other important considerations included the ethics of using publicly available internet data, the accuracy and reliability of what is shared, the ephemeral nature of social media data and how people using social media are a self-selecting sample. It was not feasible to map all social media posts with #topicalsteroidwithdrawal, so we chose to sample Instagram and Reddit posts and simulate ‘real-world’ Instagram and Reddit viewing behaviour, by sampling between specific dates. Blogs or social media posts were included if they described any aspect of the experience of living with TSWS. Screening presented us with cases where individuals had a self-diagnosis of TSWS and were unsure whether their symptoms were TSWS, which required us to make judgements on the accuracy of their accounts. We also encountered how transient social media data is with some of our selected Instagram and Reddit posts removed after inclusion.
Conclusions: The strength of including social media in this EGM was that it highlighted research topics that need greater attention from academics and clinicians. It is a methodological innovation in EGMs and sharing some of the issues encountered may provide guidance for using social media.