Background: Adverse drug events pose a significant public health burden leading to hospitalisation, disability, and death. Even those adverse events categorised as non-serious can severely impact on patient quality of life, adherence, and persistence. Monitoring medication safety is challenging. Online patient reports on social media may be a useful supplementary source of realworld data. Despite the growth of sophisticated techniques for identifying adverse events using social media data, a consensus has not been reached as to the value of social media in relation to more traditional data sources.Objective: To evaluate and characterise the utility of social media analysis in adverse drug event detection and pharmacovigilance as compared to other data sources (such as spontaneous reporting systems and the clinical literature).
Methods:In this scoping review, we searched 11 bibliographical databases and Google Scholar, followed by handsearching and forward and backward citation searching. Each records was screened by two independent reviewers at both title/abstract stage and the full-text screening stage. Studies were included if they 1) used any type of social media (such as Twitter or patient forums) to detect any adverse event associated with any drug medication and 2) compared the results ascertained from social media to any other data source. Study information was collated using a piloted data extraction sheet . Data were extracted on 1) the adverse events and drugs searched for and included, 2) the methods used (such as machine learning), 3) social media data source, 4) volume of data analysed, 5) limitations of the methodology, 6) availability of data and code, 7) comparison data source and comparison methods, 8) results, including the volume of adverse events, and how adverse events found compared to other data sources in their seriousness, frequencies, and expectedness/novelty (new vs. known knowledge) and 9) conclusions.Results: Of the 6538 unique records screened, 73 publications representing 60 studies and a wide variety of methods met our inclusion criteria. The most common social media platforms used were Twitter and online health forums. The most common comparator data source was spontaneous reporting systems, although other comparisons were made such as with scientific literature and product labels. Although similar patterns of adverse event reporting tended to be identified, the frequencies were lower in social media. Social media data were found useful in identifying new or unexpected adverse events and adverse events in a more timely manner.Conclusions: There is a large body of research comparing adverse events from social media to other sources. Most studies advocated the use of social media as an adjunct to traditional data sources. Some indicated the value of social media in understanding patient perspectives such as the impact of adverse events, which could be better explored.