ArticleJMIR public health and surveillance2017
Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance.
Article in JMIR public health and surveillance, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
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Who cites it
12 citing papers in PubMed, 33 citations in OpenAlex.
- Pharmacovigilance in the digital age: gaining insight from social media data.Experimental biology and medicine (Maywood, N.J.) · 2025Review
- The Value of Social Media Analysis for Adverse Events Detection and Pharmacovigilance: Scoping Review.JMIR public health and surveillance · 2024Article
- International attitudes towards medical and planned oocyte cryopreservation.Journal of assisted reproduction and genetics · 2024Article
- Estimating Patient Satisfaction Through a Language Processing Model: Model Development and Evaluation.JMIR formative research · 2023Article
- Language-agnostic pharmacovigilant text mining to elicit side effects from clinical notes and hospital medication records.Basic & clinical pharmacology & toxicology · 2022Article
- Analysis of Population Differences in Digital Conversations About Cancer Clinical Trials: Advanced Data Mining and Extraction Study.JMIR cancer · 2021Article
- Incorporating Unstructured Patient Narratives and Health Insurance Claims Data in Pharmacovigilance: Natural Language Processing Analysis of Patient-Generated Texts About Systemic Lupus Erythematosus.JMIR public health and surveillance · 2021Article
- Adverse Events Due to Insomnia Drugs Reported in a Regulatory Database and Online Patient Reviews: Comparative Study.Journal of medical Internet research · 2019Article
- The Adverse Drug Reactions from Patient Reports in Social Media Project: Five Major Challenges to Overcome to Operationalize Analysis and Efficiently Support Pharmacovigilance Process.JMIR research protocols · 2017Article
- Attitudes of Crohn's Disease Patients: Infodemiology Case Study and Sentiment Analysis of Facebook and Twitter Posts.JMIR public health and surveillance · 2017Article
- Understanding Online Resource Use by Transgender Youth and Caregivers: A Qualitative Study.Transgender health · 2017Article
- Social media in the infertile community-using a text analysis tool to identify the topics of discussion on the multitude of infertility blogs.Women's health (London, England)Article
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Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundAlthough several reports have suggested that patient-generated data from Internet sources could be used to improve drug safety and pharmacovigilance, few studies have identified such data sources in Japan. We introduce a unique Japanese data source: tōbyōki, which translates literally as "an account of a struggle with disease."
objectiveThe objective of this study was to evaluate the basic characteristics of the TOBYO database, a collection of tōbyōki blogs on the Internet, and discuss potential applications for pharmacovigilance.
methodsWe analyzed the overall gender and age distribution of the patient-generated TOBYO database and compared this with other external databases generated by health care professionals. For detailed analysis, we prepared separate datasets for blogs written by patients with depression and blogs written by patients with rheumatoid arthritis (RA), because these conditions were expected to entail subjective patient symptoms such as discomfort, insomnia, and pain. Frequently appearing medical terms were counted, and their variations were compared with those in an external adverse drug reaction (ADR) reporting database. Frequently appearing words regarding patients with depression and patients with RA were visualized using word clouds and word cooccurrence networks.
resultsAs of June 4, 2016, the TOBYO database comprised 54,010 blogs representing 1405 disorders. Overall, more entries were written by female bloggers (68.8%) than by male bloggers (30.8%). The most frequently observed disorders were breast cancer (4983 blogs), depression (3556), infertility (2430), RA (1118), and panic disorder (1090). Comparison of medical terms observed in tōbyōki blogs with those in an external ADR reporting database showed that subjective and symptomatic events and general terms tended to be frequently observed in tōbyōki blogs (eg, anxiety, headache, and pain), whereas events using more technical medical terms (eg, syndrome and abnormal laboratory test result) tended to be observed frequently in the ADR database. We also confirmed the feasibility of using visualization techniques to obtain insights from unstructured text-based tōbyōki blog data. Word clouds described the characteristics of each disorder, such as "sleeping" and "anxiety" in depression and "pain" and "painful" in RA.
conclusionsPharmacovigilance should maintain a strong focus on patients' actual experiences, concerns, and outcomes, and this approach can be expected to uncover hidden adverse event signals earlier and to help us understand adverse events in a patient-centered way. Patient-generated tōbyōki blogs in the TOBYO database showed unique characteristics that were different from the data in existing sources generated by health care professionals. Analysis of tōbyōki blogs would add value to the assessment of disorders with a high prevalence in women, psychiatric disorders in which subjective symptoms have important clinical meaning, refractory disorders, and other chronic disorders.
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