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Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance

BACKGROUND: Although 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...

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Autores principales: Matsuda, Shinichi, Aoki, Kotonari, Tomizawa, Shiho, Sone, Masayoshi, Tanaka, Riwa, Kuriki, Hiroshi, Takahashi, Yoichiro
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5346166/
https://www.ncbi.nlm.nih.gov/pubmed/28235749
http://dx.doi.org/10.2196/publichealth.6872
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author Matsuda, Shinichi
Aoki, Kotonari
Tomizawa, Shiho
Sone, Masayoshi
Tanaka, Riwa
Kuriki, Hiroshi
Takahashi, Yoichiro
author_facet Matsuda, Shinichi
Aoki, Kotonari
Tomizawa, Shiho
Sone, Masayoshi
Tanaka, Riwa
Kuriki, Hiroshi
Takahashi, Yoichiro
author_sort Matsuda, Shinichi
collection PubMed
description BACKGROUND: Although 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.” OBJECTIVE: The 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. METHODS: We 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. RESULTS: As 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. CONCLUSIONS: Pharmacovigilance 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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spelling pubmed-53461662017-03-20 Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance Matsuda, Shinichi Aoki, Kotonari Tomizawa, Shiho Sone, Masayoshi Tanaka, Riwa Kuriki, Hiroshi Takahashi, Yoichiro JMIR Public Health Surveill Original Paper BACKGROUND: Although 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.” OBJECTIVE: The 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. METHODS: We 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. RESULTS: As 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. CONCLUSIONS: Pharmacovigilance 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. JMIR Publications 2017-02-24 /pmc/articles/PMC5346166/ /pubmed/28235749 http://dx.doi.org/10.2196/publichealth.6872 Text en ©Shinichi Matsuda, Kotonari Aoki, Shiho Tomizawa, Masayoshi Sone, Riwa Tanaka, Hiroshi Kuriki, Yoichiro Takahashi. Originally published in JMIR Public Health and Surveillance (http://publichealth.jmir.org), 24.02.2017. https://creativecommons.org/licenses/by/2.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0/ (https://creativecommons.org/licenses/by/2.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Public Health and Surveillance, is properly cited. The complete bibliographic information, a link to the original publication on http://publichealth.jmir.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
Matsuda, Shinichi
Aoki, Kotonari
Tomizawa, Shiho
Sone, Masayoshi
Tanaka, Riwa
Kuriki, Hiroshi
Takahashi, Yoichiro
Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance
title Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance
title_full Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance
title_fullStr Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance
title_full_unstemmed Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance
title_short Analysis of Patient Narratives in Disease Blogs on the Internet: An Exploratory Study of Social Pharmacovigilance
title_sort analysis of patient narratives in disease blogs on the internet: an exploratory study of social pharmacovigilance
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5346166/
https://www.ncbi.nlm.nih.gov/pubmed/28235749
http://dx.doi.org/10.2196/publichealth.6872
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