Systematic review on social media as a data source for information on adverse effects

Article type
Authors
Golder S1, Norman G2, Loke Y1
1Cochrane Adverse Effects Methods Group, United Kingdom
2Cochrane Wounds Group, United Kingdom
Abstract
Background: Social media (such as patient forums, Twitter, and Facebook) are increasingly popular and contain a vast array of unpublished up-to-date information. There are two avenues through which social media can provide adverse effects data: first by providing references to published and unpublished literature and second by providing patients' experience of adverse effects. Social media have not yet been fully explored as a potential source of adverse effects data for systematic reviewers.
Objectives: To review the literature that has evaluated systematically or analyse the use of social media to collect information on adverse effects.
Methods: Eighteen databases (including MEDLINE and Embase) were searched for relevant studies, in addition to handsearching key journals, conferences, newsletters and blogs, contacting experts and reference checking. Any type of evaluation was considered eligible for inclusion if it assessed the use of social media to collect information on adverse effects and presented the outputs from searching social media. Data extraction and quality assessment was undertaken independently by two reviewers. Due to the nature of the included studies the quality criteria were customized to evaluate aspects such as the selection of data, duplicate data and misinformation and validity and representativeness.
Results: A total of 3045 records were retrieved (4457 before duplication). The included studies were heterogeneous in nature and thus a narrative synthesis with descriptive analysis was undertaken. We summarise the existing research on the potential value of social media for information on adverse effects and discuss the implications for systematic reviewers.
Conclusions: Case reports of adverse effects identified in social media could be a useful source of evidence in systematic reviews. In addition, posts on social media could help us identify those adverse effects most important to patients and thus help us formulate and prioritise questions on adverse effects for future systematic reviews.