Automated monitoring of online patient forums may provide real-world data on adverse drug events (ADEs) and could be used to supplement pharmacovigilance, according to a study of patients with gastrointestinal stromal tumors. The research was published in Scientific Reports.

Clinical trials are often relatively short in duration and are conducted in a small sample of fairly healthy patients, thereby limiting the ability to fully assess the ADEs of a trial drug. In addition, ADEs are often underreported in post-market surveillance. Thus, the possibility of monitoring online patient forums has been suggested as a resource for real-world data on ADEs. 

Former studies have focused on monitoring generic social media. In this study, researchers in the Netherlands conducted the first empirical case study on the use of automated pharmacovigilance for rare cancers by collecting and extracting ADEs from a large public Facebook group of patients with gastrointestinal stromal tumors (GIST). A software pipeline was developed that would automatically extract and aggregate ADEs posted in open online discussion forums.

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The researchers found that patient forum data could identify which ADEs impact quality of life the most, and that the rate of reporting these ADEs may differ considerably from those reported in clinical trials. For patients with GIST, the occurrence of alopecia and cognitive impairment with avapritinib were reported much more often than expected based on previous registration trials.

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Monitoring online patient forums may also provide real-world data on long-term ADEs and ADEs that have not been identified in registration trials. In this study, the researchers learned of the long-term consequences of osteoporosis and tremors with the use of imatinib, as well as dry eyes and muscle cramping, which had not been identified in the original registration trials.

”Thus, despite its limitations and noisy nature, automated extraction of ADEs from patient forums can help combat current under-reporting of ADEs by providing much needed real-world data that can function as input for new medical hypotheses and research,” the researchers said.


Dirkson A, Verberne S, Kraaij W, van Oortmerssen G, Gelderblom H. Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers. Sci Rep. 2022;12:10317. Published online June 20, 2022. doi:10.1038/s41598-022-13894-8