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Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers
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 for...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Nature Publishing Group UK
2022
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9209513/ https://www.ncbi.nlm.nih.gov/pubmed/35725736 http://dx.doi.org/10.1038/s41598-022-13894-8 |
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author | Dirkson, Anne Verberne, Suzan Kraaij, Wessel van Oortmerssen, Gerard Gelderblom, Hans |
author_facet | Dirkson, Anne Verberne, Suzan Kraaij, Wessel van Oortmerssen, Gerard Gelderblom, Hans |
author_sort | Dirkson, Anne |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-9209513 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Nature Publishing Group UK |
record_format | MEDLINE/PubMed |
spelling | pubmed-92095132022-06-22 Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers Dirkson, Anne Verberne, Suzan Kraaij, Wessel van Oortmerssen, Gerard Gelderblom, Hans Sci Rep Article 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. Nature Publishing Group UK 2022-06-20 /pmc/articles/PMC9209513/ /pubmed/35725736 http://dx.doi.org/10.1038/s41598-022-13894-8 Text en © The Author(s) 2022 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . |
spellingShingle | Article Dirkson, Anne Verberne, Suzan Kraaij, Wessel van Oortmerssen, Gerard Gelderblom, Hans Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers |
title | Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers |
title_full | Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers |
title_fullStr | Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers |
title_full_unstemmed | Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers |
title_short | Automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers |
title_sort | automated gathering of real-world data from online patient forums can complement pharmacovigilance for rare cancers |
topic | Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9209513/ https://www.ncbi.nlm.nih.gov/pubmed/35725736 http://dx.doi.org/10.1038/s41598-022-13894-8 |
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