Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers.

ABSTRACT: Current methods of pharmacovigilance result in severe under-reporting of adverse drug events (ADEs). Patient forums have the potential to complement current pharmacovigilance practices by providing real-time uncensored and unsolicited information. We are the first to explore the value of patient forums for rare cancers. To this end, we conduct a case study on a patient forum for Gastrointestinal Stromal Tumor patients. We have developed machine learning algorithms to automatically extract and aggregate side effects from messages on open online discussion forums. We show that patient forum data can provide suggestions for which ADEs impact quality of life the most: For many side effects the relative reporting rate differs decidedly from that of the registration trials, including for example

SUBMITTER: Dirkson A 

PROVIDER: S-EPMC9209513 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature