Background: The Food and Drug Administration (FDA) in the United States and the European Medicines Agency (EMA) have recognized social media as a new data source to strengthen their activities regarding drug safety.Objective: Our objective in the ADR-PRISM project was to provide text mining and visualization tools to explore a corpus of posts extracted from social media. We evaluated this approach on a corpus of 21 million posts from five patient forums, and conducted a qualitative analysis of the data available on methylphenidate in this corpus.Methods: We applied text mining methods based on named entity recognition and relation extraction in the corpus, followed by signal detection using proportional reporting ratio (PRR). We also used topic modeling based on the Correlated Topic Model to obtain the list of the matics in the corpus and classify the messages based on their topics.Results: We automatically identified 3443 posts about methylphenidate published between 2007 and 2016, among which 61 adverse drug reactions (ADR) were automatically detected. Two pharmacovigilance experts evaluated manually the quality of automatic identification, and a f-measure of 0.57 was reached. Patient's reports were mainly neuro-psychiatric effects. Applying PRR, 67% of the ADRs were signals, including most of the neuro-psychiatric symptoms but also palpitations. Topic modeling showed that the most represented topics were related to Childhood and Treatment initiation, but also Side effects. Cases of misuse were also identified in this corpus, including recreational use and abuse.Conclusion: Named entity recognition combined with signal detection and topic modeling have demonstrated their complementarity in mining social media data. An in-depth analysis focused on methylphenidate showed that this approach was able to detect potential signals and to provide better understanding of patients' behaviors regarding drugs, including misuse.
BackgroundMedication nonadherence is a major impediment to the management of many health conditions. A better understanding of the factors underlying noncompliance to treatment may help health professionals to address it. Patients use peer-to-peer virtual communities and social media to share their experiences regarding their treatments and diseases. Using topic models makes it possible to model themes present in a collection of posts, thus to identify cases of noncompliance.ObjectiveThe aim of this study was to detect messages describing patients’ noncompliant behaviors associated with a drug of interest. Thus, the objective was the clustering of posts featuring a homogeneous vocabulary related to nonadherent attitudes.MethodsWe focused on escitalopram and aripiprazole used to treat depression and psychotic conditions, respectively. We implemented a probabilistic topic model to identify the topics that occurred in a corpus of messages mentioning these drugs, posted from 2004 to 2013 on three of the most popular French forums. Data were collected using a Web crawler designed by Kappa Santé as part of the Detec’t project to analyze social media for drug safety. Several topics were related to noncompliance to treatment.ResultsStarting from a corpus of 3650 posts related to an antidepressant drug (escitalopram) and 2164 posts related to an antipsychotic drug (aripiprazole), the use of latent Dirichlet allocation allowed us to model several themes, including interruptions of treatment and changes in dosage.The topic model approach detected cases of noncompliance behaviors with a recall of 98.5% (272/276) and a precision of 32.6% (272/844).ConclusionsTopic models enabled us to explore patients’ discussions on community websites and to identify posts related with noncompliant behaviors. After a manual review of the messages in the noncompliance topics, we found that noncompliance to treatment was present in 6.17% (276/4469) of the posts.
Background During the COVID-19 pandemic, numerous countries, including China and France, have implemented lockdown measures that have been effective in controlling the epidemic. However, little is known about the impact of these measures on the population as expressed on social media from different cultural contexts. Objective This study aims to assess and compare the evolution of the topics discussed on Chinese and French social media during the COVID-19 lockdown. Methods We extracted posts containing COVID-19–related or lockdown-related keywords in the most commonly used microblogging social media platforms (ie, Weibo in China and Twitter in France) from 1 week before lockdown to the lifting of the lockdown. A topic model was applied independently for three periods (prelockdown, early lockdown, and mid to late lockdown) to assess the evolution of the topics discussed on Chinese and French social media. Results A total of 6395; 23,422; and 141,643 Chinese Weibo messages, and 34,327; 119,919; and 282,965 French tweets were extracted in the prelockdown, early lockdown, and mid to late lockdown periods, respectively, in China and France. Four categories of topics were discussed in a continuously evolving way in all three periods: epidemic news and everyday life, scientific information, public measures, and solidarity and encouragement. The most represented category over all periods in both countries was epidemic news and everyday life. Scientific information was far more discussed on Weibo than in French tweets. Misinformation circulated through social media in both countries; however, it was more concerned with the virus and epidemic in China, whereas it was more concerned with the lockdown measures in France. Regarding public measures, more criticisms were identified in French tweets than on Weibo. Advantages and data privacy concerns regarding tracing apps were also addressed in French tweets. All these differences were explained by the different uses of social media, the different timelines of the epidemic, and the different cultural contexts in these two countries. Conclusions This study is the first to compare the social media content in eastern and western countries during the unprecedented COVID-19 lockdown. Using general COVID-19–related social media data, our results describe common and different public reactions, behaviors, and concerns in China and France, even covering the topics identified in prior studies focusing on specific interests. We believe our study can help characterize country-specific public needs and appropriately address them during an outbreak.
Background Immune checkpoint inhibitors (ICIs) are increasingly used to treat several types of tumors. Impact of this emerging therapy on patients’ health-related quality of life (HRQoL) is usually collected in clinical trials through standard questionnaires. However, this might not fully reflect HRQoL of patients under real-world conditions. In parallel, users’ narratives from social media represent a potential new source of research concerning HRQoL. Objective The aim of this study is to assess and compare coverage of ICI-treated patients’ HRQoL domains and subdomains in standard questionnaires from clinical trials and in real-world setting from social media posts. Methods A retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experiences with ICIs between January 2011 and August 2018. Automatic and manual extractions were implemented to create a corpus where domains and subdomains of HRQoL were classified. These annotations were compared with domains covered by 2 standard HRQoL questionnaires, the EORTC QLQ-C30 and the FACT-G. Results We identified 150 users who described their own experience with ICI (89/150, 59.3%) or that of their relative (61/150, 40.7%), with 137 users (91.3%) reporting at least one HRQoL domain in their social media posts. A total of 8 domains and 42 subdomains of HRQoL were identified: Global health (1 subdomain; 115 patients), Symptoms (13; 76), Emotional state (10; 49), Role (7; 22), Physical activity (4; 13), Professional situation (3; 9), Cognitive state (2; 2), and Social state (2; 2). The QLQ-C30 showed a wider global coverage of social media HRQoL subdomains than the FACT-G, 45% (19/42) and 29% (12/42), respectively. For both QLQ-C30 and FACT-G questionnaires, coverage rates were particularly suboptimal for Symptoms (68/123, 55.3% and 72/123, 58.5%, respectively), Emotional state (7/49, 14% and 24/49, 49%, respectively), and Role (17/22, 77% and 15/22, 68%, respectively). Conclusions Many patients with cancer are using social media to share their experiences with immunotherapy. Collecting and analyzing their spontaneous narratives are helpful to capture and understand their HRQoL in real-world setting. New measures of HRQoL are needed to provide more in-depth evaluation of Symptoms, Emotional state, and Role among patients with cancer treated with immunotherapy.
Background Gastrointestinal (GI) discomfort is prevalent and known to be associated with impaired quality of life. Real-world information on factors of GI discomfort and solutions used by people is, however, limited. Social media, including online forums, have been considered a new source of information to examine the health of populations in real-life settings. Objective The aims of this retrospective infodemiology study are to identify discussion topics, characterize users, and identify perceived determinants of GI discomfort in web-based messages posted by users of French social media. Methods Messages related to GI discomfort posted between January 2003 and August 2018 were extracted from 14 French-speaking general and specialized publicly available online forums. Extracted messages were cleaned and deidentified. Relevant medical concepts were determined on the basis of the Medical Dictionary for Regulatory Activities and vernacular terms. The identification of discussion topics was carried out by using a correlated topic model on the basis of the latent Dirichlet allocation. A nonsupervised clustering algorithm was applied to cluster forum users according to the reported symptoms of GI discomfort, discussion topics, and activity on online forums. Users’ age and gender were determined by linear regression and application of a support vector machine, respectively, to characterize the identified clusters according to demographic parameters. Perceived factors of GI discomfort were classified by a combined method on the basis of syntactic analysis to identify messages with causality terms and a second topic modeling in a relevant segment of phrases. Results A total of 198,866 messages associated with GI discomfort were included in the analysis corpus after extraction and cleaning. These messages were posted by 36,989 separate web users, most of them being women younger than 40 years. Everyday life, diet, digestion, abdominal pain, impact on the quality of life, and tips to manage stress were among the most discussed topics. Segmentation of users identified 5 clusters corresponding to chronic and acute GI concerns. Diet topic was associated with each cluster, and stress was strongly associated with abdominal pain. Psychological factors, food, and allergens were perceived as the main causes of GI discomfort by web users. Conclusions GI discomfort is actively discussed by web users. This study reveals a complex relationship between food, stress, and GI discomfort. Our approach has shown that identifying web-based discussion topics associated with GI discomfort and its perceived factors is feasible and can serve as a complementary source of real-world evidence for caregivers.
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