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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 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.

SUBMITTER: Dirkson A

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

REPOSITORIES: biostudies-literature

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

Dirkson Anne A Verberne Suzan S Kraaij Wessel W van Oortmerssen Gerard G Gelderblom Hans H

Scientific reports 20220620 1

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 ag ...[more]

PMID: 35725736

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Project description:IntroductionPeer online mental health forums are commonly used and offer accessible support. Positive and negative impacts have been reported by forum members and moderators, but it is unclear why these impacts occur, for whom and in which forums. This multiple method realist study explores underlying mechanisms to understand how forums work for different people. The findings will inform codesign of best practice guidance and policy tools to enhance the uptake and effectiveness of peer online mental health forums.Methods and analysisIn workstream 1, we will conduct a realist synthesis, based on existing literature and interviews with approximately 20 stakeholders, to generate initial programme theories about the impacts of forums on members and moderators and mechanisms driving these. Initial theories that are relevant for forum design and implementation will be prioritised for testing in workstream 2.Workstream 2 is a multiple case study design with mixed methods with several online mental health forums differing in contextual features. Quantitative surveys of forum members, qualitative interviews and Corpus-based Discourse Analysis and Natural Language Processing of forum posts will be used to test and refine programme theories. Final programme theories will be developed through novel triangulation of the data.Workstream 3 will run alongside workstreams 1 and 2. Key stakeholders from participating forums, including members and moderators, will be recruited to a Codesign group. They will inform the study design and materials, refine and prioritise theories, and codesign best policy and practice guidance.Ethics and disseminationEthical approval was granted by Solihull Research Ethics Committee (IRAS 314029). Findings will be reported in accordance with RAMESES (Realist And MEta-narrative Evidence Syntheses: Evolving Standards) guidelines, published as open access and shared widely, along with codesigned tools.Trial registration numberISRCTN 62469166; the protocol for the realist synthesis in workstream one is prospectively registered at PROSPERO CRD42022352528.

Project description:Increasingly, individuals experiencing loneliness are seeking support on online forums-some of which focus specifically on discussions around loneliness (loneliness forums); loneliness may influence how these individuals communicate in other online forums not focused on loneliness (non-loneliness forums). In order to provide effective and appropriate online interventions around loneliness, it is important to understand how users who publish posts in a loneliness forum communicate in the loneliness forum and non-loneliness forums they belong to. In this paper, using language features, the following analyses are conducted: (1) Posts published on an online loneliness forum on Reddit, /r/Lonely are compared to posts (published by the same users and around the same time period) on two Reddit online forums i.e. an advice seeking forum, /r/AskReddit and a forum focused on discussions around depression (depression forum), /r/depression. (2) Interventions related to loneliness may vary depending on if an individual is lonely and depressed or lonely but not depressed; language use differences in posts published in /r/Lonely by the following set of users are identified: (a) users who post in both /r/Lonely and a depression forum and (b) users who post in /r/Lonely but not in the depression forum. The findings from this work gain new insights, for example: (i) /r/Lonely users tend to seek advice/ask questions related to relationships in the advice seeking forum, /r/AskReddit and (ii) users who are members of the loneliness forum but not the depression forum tend to publish posts (on the loneliness forum) on topic themes related to work/job, however, those who are members of the loneliness and depression forums tend to use more words associated with anger, negation, death, and post on topic themes related to affection relative to relationships in their loneliness forum posts. Some of the findings from this work also align with prior work e.g. users who express loneliness in online forums tend to make more reference to self. These findings aid in gaining insights into how users communicate on these forums and their support needs, thereby informing loneliness interventions.

Dataset Information

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

Publications

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

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