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. 2022 Jun 20;12(1):10317.
doi: 10.1038/s41598-022-13894-8.

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

Anne Dirkson  1 , Suzan Verberne  2 , Wessel Kraaij  1 , Gerard van Oortmerssen  1   3 , Hans Gelderblom  4
Affiliations

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

Anne Dirkson et al. Sci Rep. .

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 cognitive impairment and alopecia as side effects of avapritinib. We also show that our methods can provide real-world data for long-term ADEs, such as osteoporosis and tremors for imatinib, and novel ADEs not found in registration trials, such as dry eyes and muscle cramping for imatinib. We thus posit that automated pharmacovigilance from patient forums can provide real-world data for ADEs and should be employed as input for medical hypotheses for rare cancers.

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Conflict of interest statement

The authors declare no competing interests.

Figures

Figure 1
Figure 1
An overview of the software pipeline we developed for automatically determining which adverse drug effects (ADE) are mentioned on a patient forum. All italicized parts indicate modules we developed. An example message is provided to clarify each step. ADE: adverse drug events.
Figure 2
Figure 2
The 20 most prevalent adverse drug events reported for avapritinib (formerly BLU-285) on the GIST patient forum.
Figure 3
Figure 3
The change in rank in terms of prevalence of reporting of the top 10 adverse drug events found for avapritinib on the forum (left) compared to the registration trial (right). ADE: adverse drug events.
Figure 4
Figure 4
The 20 most prevalent long-term adverse drug events reported for imatinib on the forum.
Figure 5
Figure 5
The 20 most prevalent adverse drug events for imatinib that were not found in the registration trials.
See this image and copyright information in PMC

References

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