Public Perspectives of Using Social Media Data to Improve Adverse Drug Reaction Reporting: A Mixed-Methods Study

Introduction Information on suspected adverse drug reactions (ADRs) voluntarily submitted by patients can be a valuable source of information for improving drug safety; however, public awareness of reporting mechanisms remains low. Whilst methods to automatically detect ADR mentions from social media posts using text mining techniques have been proposed to improve reporting rates, it is unclear how acceptable these would be to social media users. Objective The objective of this study was to explore public opinion about using automated methods to detect and report mentions of ADRs on social media to enhance pharmacovigilance efforts. Methods Users of the online health discussion forum HealthUnlocked participated in an online survey (N = 1359) about experiences with ADRs, knowledge of pharmacovigilance methods, and opinions about using automated data mining methods to detect and report ADRs. To further explore responses, five qualitative focus groups were conducted with 20 social media users with long-term health conditions. Results Participant responses indicated a low awareness of pharmacovigilance methods and ADR reporting. They showed a strong willingness to share health-related social media data about ADRs with researchers and regulators, but were cautious about automated text mining methods of detecting and reporting ADRs. Conclusions Social media users value public-facing pharmacovigilance schemes, even if they do not understand the current framework of pharmacovigilance within the UK. Ongoing engagement with users is essential to understand views, share knowledge and respect users’ privacy expectations to optimise future ADR reporting from online health communities.