Ilona Fridman, Dahlia Boyles, Ria Chheda, Carrie Baldwin-SoRelle, Angela B Smith, Jennifer Elston Lafata
{"title":"Identifying Misinformation About Unproven Cancer Treatments on Social Media Using User-Friendly Linguistic Characteristics: Content Analysis.","authors":"Ilona Fridman, Dahlia Boyles, Ria Chheda, Carrie Baldwin-SoRelle, Angela B Smith, Jennifer Elston Lafata","doi":"10.2196/62703","DOIUrl":"10.2196/62703","url":null,"abstract":"<p><strong>Background: </strong>Health misinformation, prevalent in social media, poses a significant threat to individuals, particularly those dealing with serious illnesses such as cancer. The current recommendations for users on how to avoid cancer misinformation are challenging because they require users to have research skills.</p><p><strong>Objective: </strong>This study addresses this problem by identifying user-friendly characteristics of misinformation that could be easily observed by users to help them flag misinformation on social media.</p><p><strong>Methods: </strong>Using a structured review of the literature on algorithmic misinformation detection across political, social, and computer science, we assembled linguistic characteristics associated with misinformation. We then collected datasets by mining X (previously known as Twitter) posts using keywords related to unproven cancer therapies and cancer center usernames. This search, coupled with manual labeling, allowed us to create a dataset with misinformation and 2 control datasets. We used natural language processing to model linguistic characteristics within these datasets. Two experiments with 2 control datasets used predictive modeling and Lasso regression to evaluate the effectiveness of linguistic characteristics in identifying misinformation.</p><p><strong>Results: </strong>User-friendly linguistic characteristics were extracted from 88 papers. The short-listed characteristics did not yield optimal results in the first experiment but predicted misinformation with an accuracy of 73% in the second experiment, in which posts with misinformation were compared with posts from health care systems. The linguistic characteristics that consistently negatively predicted misinformation included tentative language, location, URLs, and hashtags, while numbers, absolute language, and certainty expressions consistently predicted misinformation positively.</p><p><strong>Conclusions: </strong>This analysis resulted in user-friendly recommendations, such as exercising caution when encountering social media posts featuring unwavering assurances or specific numbers lacking references. Future studies should test the efficacy of the recommendations among information users.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"5 ","pages":"e62703"},"PeriodicalIF":3.5,"publicationDate":"2025-02-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11888050/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143411968","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Visualizing YouTube Commenters' Conceptions of the US Health Care System: Semantic Network Analysis Method for Evidence-Based Policy Making.","authors":"Lana V Ivanitskaya, Elina Erzikova","doi":"10.2196/58227","DOIUrl":"10.2196/58227","url":null,"abstract":"<p><strong>Background: </strong>The challenge of extracting meaningful patterns from the overwhelming noise of social media to guide decision-makers remains largely unresolved.</p><p><strong>Objective: </strong>This study aimed to evaluate the application of a semantic network method for creating an interactive visualization of social media discourse surrounding the US health care system.</p><p><strong>Methods: </strong>Building upon bibliometric approaches to conducting health studies, we repurposed the VOSviewer software program to analyze 179,193 YouTube comments about the US health care system. Using the overlay-enhanced semantic network method, we mapped the contents and structure of the commentary evoked by 53 YouTube videos uploaded in 2014 to 2023 by right-wing, left-wing, and centrist media outlets. The videos included newscasts, full-length documentaries, political satire, and stand-up comedy. We analyzed term co-occurrence network clusters, contextualized with custom-built information layers called overlays, and performed tests of the semantic network's robustness, representativeness, structural relevance, semantic accuracy, and usefulness for decision support. We examined how the comments mentioning 4 health system design concepts-universal health care, Medicare for All, single payer, and socialized medicine-were distributed across the network terms.</p><p><strong>Results: </strong>Grounded in the textual data, the macrolevel network representation unveiled complex discussions about illness and wellness; health services; ideology and society; the politics of health care agendas and reforms, market regulation, and health insurance; the health care workforce; dental care; and wait times. We observed thematic alignment between the network terms, extracted from YouTube comments, and the videos that elicited these comments. Discussions about illness and wellness persisted across time, as well as international comparisons of costs of ambulances, specialist care, prescriptions, and appointment wait times. The international comparisons were linked to commentaries with a higher concentration of British-spelled words, underscoring the global nature of the US health care discussion, which attracted domestic and global YouTube commenters. Shortages of nurses, nurse burnout, and their contributing factors (eg, shift work, nurse-to-patient staffing ratios, and corporate greed) were covered in comments with many likes. Comments about universal health care had much higher use of ideological terms than comments about single-payer health systems.</p><p><strong>Conclusions: </strong>YouTube users addressed issues of societal and policy relevance: social determinants of health, concerns for populations considered vulnerable, health equity, racism, health care quality, and access to essential health services. Versatile and applicable to health policy studies, the method presented and evaluated in our study supports evidence-based decision-making and conte","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"5 ","pages":"e58227"},"PeriodicalIF":3.5,"publicationDate":"2025-02-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11862770/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143392391","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Unveiling Topics and Emotions in Arabic Tweets Surrounding the COVID-19 Pandemic: Topic Modeling and Sentiment Analysis Approach.","authors":"Farah Alshanik, Rawand Khasawneh, Alaa Dalky, Ethar Qawasmeh","doi":"10.2196/53434","DOIUrl":"10.2196/53434","url":null,"abstract":"<p><strong>Background: </strong>The worldwide effects of the COVID-19 pandemic have been profound, and the Arab world has not been exempt from its wide-ranging consequences. Within this context, social media platforms such as Twitter have become essential for sharing information and expressing public opinions during this global crisis. Careful investigation of Arabic tweets related to COVID-19 can provide invaluable insights into the common topics and underlying sentiments that shape discussions about the COVID-19 pandemic.</p><p><strong>Objective: </strong>This study aimed to understand the concerns and feelings of Twitter users in Arabic-speaking countries about the COVID-19 pandemic. This was accomplished through analyzing the themes and sentiments that were expressed in Arabic tweets about the COVID-19 pandemic.</p><p><strong>Methods: </strong>In this study, 1 million Arabic tweets about COVID-19 posted between March 1 and March 31, 2020, were analyzed. Machine learning techniques, such as topic modeling and sentiment analysis, were applied to understand the main topics and emotions that were expressed in these tweets.</p><p><strong>Results: </strong>The analysis of Arabic tweets revealed several prominent topics related to COVID-19. The analysis identified and grouped 16 different conversation topics that were organized into eight themes: (1) preventive measures and safety, (2) medical and health care aspects, (3) government and social measures, (4) impact and numbers, (5) vaccine development and research, (6) COVID-19 and religious practices, (7) global impact of COVID-19 on sports and countries, and (8) COVID-19 and national efforts. Across all the topics identified, the prevailing sentiments regarding the spread of COVID-19 were primarily centered around anger, followed by disgust, joy, and anticipation. Notably, when conversations revolved around new COVID-19 cases and fatalities, public tweets revealed a notably heightened sense of anger in comparison to other subjects.</p><p><strong>Conclusions: </strong>The study offers valuable insights into the topics and emotions expressed in Arabic tweets related to COVID-19. It demonstrates the significance of social media platforms, particularly Twitter, in capturing the Arabic-speaking community's concerns and sentiments during the COVID-19 pandemic. The findings contribute to a deeper understanding of the prevailing discourse, enabling stakeholders to tailor effective communication strategies and address specific public concerns. This study underscores the importance of monitoring social media conversations in Arabic to support public health efforts and crisis management during the COVID-19 pandemic.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"5 ","pages":"e53434"},"PeriodicalIF":3.5,"publicationDate":"2025-02-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11851025/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143384280","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Assessment of Reliability and Validity of Celiac Disease-Related YouTube Videos: Content Analysis.","authors":"Yunus Halil Polat, Rasim Eren Cankurtaran","doi":"10.2196/58615","DOIUrl":"10.2196/58615","url":null,"abstract":"<p><strong>Background: </strong>YouTube is an increasingly used platform for medical information. However, the reliability and validity of health-related information on celiac disease (CD) on YouTube have not been determined.</p><p><strong>Objective: </strong>This study aimed to analyze the reliability and validity of CD-related YouTube videos.</p><p><strong>Methods: </strong>On November 15, 2023, a search was performed on YouTube using the keyword \"celiac disease.\" This search resulted in a selection of videos, which were then reviewed by 2 separate evaluators for content, origin, and specific features. The evaluators assessed the reliability and quality of these videos using a modified DISCERN (mDISCERN) score, the Journal of the American Medical Association (JAMA) benchmark criteria score, the usefulness score, video power index (VPI), and the Global Quality Scale (GQS) score.</p><p><strong>Results: </strong>In the analysis of 120 initially screened CD videos, 85 met the criteria for inclusion in the study after certain videos were excluded based on predefined criteria. While the duration of the videos uploaded by health care professionals was significantly longer than the other group (P=.009), it was concluded that the median scores for mDISCERN (4, IQR 4-5 vs 2, IQR 2-3; P<.001), GQS (4, IQR 4-5 vs 3, IQR 2-3; P<.001), JAMA (4, IQR 3-4 vs 2, IQR 2-3; P<.001), and usefulness (8, IQR 7-9 vs 6, IQR 3-6; P<.001) of the videos from this group were significantly higher than those from non-health care professionals. Video interaction parameters, including the median number of views, views per day, likes, dislikes, comments, and VPI, demonstrated no significant difference between the 2 groups.</p><p><strong>Conclusions: </strong>This study showed that YouTube videos about CD vary significantly in reliability and quality depending on their source. Increasing the production of reliable videos by health care professionals may help to improve patient education and make YouTube a more reliable resource.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":" ","pages":"e58615"},"PeriodicalIF":3.5,"publicationDate":"2025-02-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11836586/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142933844","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Dorian Arifi, Bernd Resch, Mauricio Santillana, Weihe Wendy Guan, Steffen Knoblauch, Sven Lautenbach, Thomas Jaenisch, Ivonne Morales, Clemens Havas
{"title":"Geosocial Media's Early Warning Capabilities Across US County-Level Political Clusters: Observational Study.","authors":"Dorian Arifi, Bernd Resch, Mauricio Santillana, Weihe Wendy Guan, Steffen Knoblauch, Sven Lautenbach, Thomas Jaenisch, Ivonne Morales, Clemens Havas","doi":"10.2196/58539","DOIUrl":"10.2196/58539","url":null,"abstract":"<p><strong>Background: </strong>The novel coronavirus disease (COVID-19) sparked significant health concerns worldwide, prompting policy makers and health care experts to implement nonpharmaceutical public health interventions, such as stay-at-home orders and mask mandates, to slow the spread of the virus. While these interventions proved essential in controlling transmission, they also caused substantial economic and societal costs and should therefore be used strategically, particularly when disease activity is on the rise. In this context, geosocial media posts (posts with an explicit georeference) have been shown to provide a promising tool for anticipating moments of potential health care crises. However, previous studies on the early warning capabilities of geosocial media data have largely been constrained by coarse spatial resolutions or short temporal scopes, with limited understanding of how local political beliefs may influence these capabilities.</p><p><strong>Objective: </strong>This study aimed to assess how the epidemiological early warning capabilities of geosocial media posts for COVID-19 vary over time and across US counties with differing political beliefs.</p><p><strong>Methods: </strong>We classified US counties into 3 political clusters, democrat, republican, and swing counties, based on voting data from the last 6 federal election cycles. In these clusters, we analyzed the early warning capabilities of geosocial media posts across 6 consecutive COVID-19 waves (February 2020-April 2022). We specifically examined the temporal lag between geosocial media signals and surges in COVID-19 cases, measuring both the number of days by which the geosocial media signals preceded the surges in COVID-19 cases (temporal lag) and the correlation between their respective time series.</p><p><strong>Results: </strong>The early warning capabilities of geosocial media data differed across political clusters and COVID-19 waves. On average, geosocial media posts preceded COVID-19 cases by 21 days in republican counties compared with 14.6 days in democrat counties and 24.2 days in swing counties. In general, geosocial media posts were preceding COVID-19 cases in 5 out of 6 waves across all political clusters. However, we observed a decrease over time in the number of days that posts preceded COVID-19 cases, particularly in democrat and republican counties. Furthermore, a decline in signal strength and the impact of trending topics presented challenges for the reliability of the early warning signals.</p><p><strong>Conclusions: </strong>This study provides valuable insights into the strengths and limitations of geosocial media data as an epidemiological early warning tool, particularly highlighting how they can change across county-level political clusters. Thus, these findings indicate that future geosocial media based epidemiological early warning systems might benefit from accounting for political beliefs. In addition, the impact of declining ge","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"5 ","pages":"e58539"},"PeriodicalIF":3.5,"publicationDate":"2025-01-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11826950/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143070047","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Fiorella Huijgens, Pascale Kwakman, Marij Hillen, Julia van Weert, Monique Jaspers, Ellen Smets, Annemiek Linn
{"title":"How Patients With Cancer Use the Internet to Search for Health Information: Scenario-Based Think-Aloud Study.","authors":"Fiorella Huijgens, Pascale Kwakman, Marij Hillen, Julia van Weert, Monique Jaspers, Ellen Smets, Annemiek Linn","doi":"10.2196/59625","DOIUrl":"10.2196/59625","url":null,"abstract":"<p><strong>Background: </strong>Patients with cancer increasingly use the internet to seek health information. However, thus far, research treats web-based health information seeking (WHIS) behavior in a rather dichotomous manner (ie, approaching or avoiding) and fails to capture the dynamic nature and evolving motivations that patients experience when engaging in WHIS throughout their disease trajectory. Insights can be used to support effective patient-provider communication about WHIS and can lead to better designed web-based health platforms.</p><p><strong>Objective: </strong>This study explored patterns of motivations and emotions behind the web-based information seeking of patients with cancer at various stages of their disease trajectory, as well as the cognitive and emotional responses evoked by WHIS via a scenario-based, think-aloud approach.</p><p><strong>Methods: </strong>In total, 15 analog patients were recruited, representing patients with cancer, survivors, and informal caregivers. Imagining themselves in 3 scenarios-prediagnosis phase (5/15, 33%), treatment phase (5/15, 33%), and survivor phase (5/15, 33%)-patients were asked to search for web-based health information while being prompted to verbalize their thoughts. In total, 2 researchers independently coded the sessions, categorizing the codes into broader themes to comprehend analog patients' experiences during WHIS.</p><p><strong>Results: </strong>Overarching motives for WHIS included reducing uncertainty, seeking reassurance, and gaining empowerment. At the beginning of the disease trajectory, patients mainly showed cognitive needs, whereas this shifted more toward affective needs in the subsequent disease stages. Analog patients' WHIS approaches varied from exploratory to focused or a combination of both. They adapted their search strategy when faced with challenging cognitive or emotional content. WHIS triggered diverse emotions, fluctuating throughout the search. Complex, confrontational, and unexpected information mainly induced negative emotions.</p><p><strong>Conclusions: </strong>This study provides valuable insights into the motivations of patients with cancer underlying WHIS and the emotions experienced at various stages of the disease trajectory. Understanding patients' search patterns is pivotal in optimizing web-based health platforms to cater to specific needs. In addition, these findings can guide clinicians in accommodating patients' specific needs and directing patients toward reliable sources of web-based health information.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"5 ","pages":"e59625"},"PeriodicalIF":3.5,"publicationDate":"2025-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11783026/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143016347","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Victor Suarez-Lledo, Esther Ortega-Martin, Jesus Carretero-Bravo, Begoña Ramos-Fiol, Javier Alvarez-Galvez
{"title":"Unraveling the Use of Disinformation Hashtags by Social Bots During the COVID-19 Pandemic: Social Networks Analysis.","authors":"Victor Suarez-Lledo, Esther Ortega-Martin, Jesus Carretero-Bravo, Begoña Ramos-Fiol, Javier Alvarez-Galvez","doi":"10.2196/50021","DOIUrl":"10.2196/50021","url":null,"abstract":"<p><strong>Background: </strong>During the COVID-19 pandemic, social media platforms have been a venue for the exchange of messages, including those related to fake news. There are also accounts programmed to disseminate and amplify specific messages, which can affect individual decision-making and present new challenges for public health.</p><p><strong>Objective: </strong>This study aimed to analyze how social bots use hashtags compared to human users on topics related to misinformation during the outbreak of the COVID-19 pandemic.</p><p><strong>Methods: </strong>We selected posts on specific topics related to infodemics such as vaccines, hydroxychloroquine, military, conspiracy, laboratory, Bill Gates, 5G, and UV. We built a network based on the co-occurrence of hashtags and classified the posts based on their source. Using network analysis and community detection algorithms, we identified hashtags that tend to appear together in messages. For each topic, we extracted the most relevant subtopic communities, which are groups of interconnected hashtags.</p><p><strong>Results: </strong>The distribution of bots and nonbots in each of these communities was uneven, with some sets of hashtags being more common among accounts classified as bots or nonbots. Hashtags related to the Trump and QAnon social movements were common among bots, and specific hashtags with anti-Asian sentiments were also identified. In the subcommunities most populated by bots in the case of vaccines, the group of hashtags including #billgates, #pandemic, and #china was among the most common.</p><p><strong>Conclusions: </strong>The use of certain hashtags varies depending on the source, and some hashtags are used for different purposes. Understanding these patterns may help address the spread of health misinformation on social media networks.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"5 ","pages":"e50021"},"PeriodicalIF":3.5,"publicationDate":"2025-01-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11757974/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142959576","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Understanding and Combating Misinformation: An Evolutionary Perspective.","authors":"Nicola Luigi Bragazzi, Sergio Garbarino","doi":"10.2196/65521","DOIUrl":"10.2196/65521","url":null,"abstract":"<p><p>Misinformation represents an evolutionary paradox: despite its harmful impact on society, it persists and evolves, thriving in the information-rich environment of the digital age. This paradox challenges the conventional expectation that detrimental entities should diminish over time. The persistence of misinformation, despite advancements in fact-checking and verification tools, suggests that it possesses adaptive qualities that enable it to survive and propagate. This paper explores how misinformation, as a blend of truth and fiction, continues to resonate with audiences. The role of narratives in human history, particularly in the evolution of Homo narrans, underscores the enduring influence of storytelling on cultural and social cohesion. Despite the increasing ability of individuals to verify the accuracy of sources, misinformation remains a significant challenge, often spreading rapidly through digital platforms. Current behavioral research tends to treat misinformation as completely irrational, static, finite entities that can be definitively debunked, overlooking their dynamic and evolving nature. This approach limits our understanding of the behavioral and societal factors driving the transformation of misinformation over time. The persistence of misinformation can be attributed to several factors, including its role in fostering social cohesion, its perceived short-term benefits, and its use in strategic deception. Techniques such as extrapolation, intrapolation, deformation, cherry-picking, and fabrication contribute to the production and spread of misinformation. Understanding these processes and the evolutionary advantages they confer is crucial for developing effective strategies to counter misinformation. By promoting transparency, critical thinking, and accurate information, society can begin to address the root causes of misinformation and create a more resilient information environment.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":" ","pages":"e65521"},"PeriodicalIF":3.5,"publicationDate":"2024-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11724212/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142514189","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Juanita-Dawne Bacsu, Sarah Anne Fraser, Ali Akbar Jamali, Christine Conanan, Alison L Chasteen, Shirin Vellani, Rory Gowda-Sookochoff, Corinne Berger, Jasmine C Mah, Florriann Fehr, Anila Virani, Zahra Rahemi, Kate Nanson, Allison Cammer, Melissa K Andrew, Karl S Grewal, Katherine S McGilton, Samantha Lautrup, Raymond J Spiteri
{"title":"Navigating Awareness and Strategies to Support Dementia Advocacy on Social Media During World Alzheimer's Month: Infodemiology Study.","authors":"Juanita-Dawne Bacsu, Sarah Anne Fraser, Ali Akbar Jamali, Christine Conanan, Alison L Chasteen, Shirin Vellani, Rory Gowda-Sookochoff, Corinne Berger, Jasmine C Mah, Florriann Fehr, Anila Virani, Zahra Rahemi, Kate Nanson, Allison Cammer, Melissa K Andrew, Karl S Grewal, Katherine S McGilton, Samantha Lautrup, Raymond J Spiteri","doi":"10.2196/63464","DOIUrl":"10.2196/63464","url":null,"abstract":"<p><strong>Background: </strong>Understanding advocacy strategies is essential to improving dementia awareness, reducing stigma, supporting cognitive health promotion, and influencing policy to support people living with dementia. However, there is a dearth of evidence-based research on advocacy strategies used to support dementia awareness.</p><p><strong>Objective: </strong>This study aimed to use posts from X (formerly known as Twitter) to understand dementia advocacy strategies during World Alzheimer's Awareness Month in September 2022.</p><p><strong>Methods: </strong>Posts were scraped from X during World Alzheimer's Awareness Month from September 1, 2022, to September 30, 2022. After applying filters, 1981 relevant posts were analyzed using thematic analysis, and measures were taken to support trustworthiness and rigor.</p><p><strong>Results: </strong>Our study revealed a variety of advocacy strategies, including sharing the voices of lived experience, targeting ethnic and cultural groups, myth-busting strategies, and political lobbying. Although a range of strategies were identified, further research is needed to examine advocacy strategies within different countries and political contexts. Furthermore, the impact of specific strategies on stigma reduction, cognitive health promotion, and policy change needs to be scientifically evaluated.</p><p><strong>Conclusions: </strong>Our study offers valuable insight into strategies to bolster dementia advocacy and awareness campaigns to support people living with dementia. Findings from our research may provide critical insight for policymakers, organizations, and health professionals working to reduce dementia-related stigma and increase the uptake of risk-reduction activities to support the promotion of cognitive health.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"4 ","pages":"e63464"},"PeriodicalIF":3.5,"publicationDate":"2024-12-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11724219/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142900980","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Application of a Language Model Tool for COVID-19 Vaccine Adverse Event Monitoring Using Web and Social Media Content: Algorithm Development and Validation Study.","authors":"Chathuri Daluwatte, Alena Khromava, Yuning Chen, Laurence Serradell, Anne-Laure Chabanon, Anthony Chan-Ou-Teung, Cliona Molony, Juhaeri Juhaeri","doi":"10.2196/53424","DOIUrl":"10.2196/53424","url":null,"abstract":"<p><strong>Background: </strong>Spontaneous pharmacovigilance reporting systems are the main data source for signal detection for vaccines. However, there is a large time lag between the occurrence of an adverse event (AE) and the availability for analysis. With global mass COVID-19 vaccination campaigns, social media, and web content, there is an opportunity for real-time, faster monitoring of AEs potentially related to COVID-19 vaccine use. Our work aims to detect AEs from social media to augment those from spontaneous reporting systems.</p><p><strong>Objective: </strong>This study aims to monitor AEs shared in social media and online support groups using medical context-aware natural language processing language models.</p><p><strong>Methods: </strong>We developed a language model-based web app to analyze social media, patient blogs, and forums (from 190 countries in 61 languages) around COVID-19 vaccine-related keywords. Following machine translation to English, lay language safety terms (ie, AEs) were observed using the PubmedBERT-based named-entity recognition model (precision=0.76 and recall=0.82) and mapped to Medical Dictionary for Regulatory Activities (MedDRA) terms using knowledge graphs (MedDRA terminology is an internationally used set of terms relating to medical conditions, medicines, and medical devices that are developed and registered under the auspices of the International Council for Harmonization of Technical Requirements for Pharmaceuticals for Human Use). Weekly and cumulative aggregated AE counts, proportions, and ratios were displayed via visual analytics, such as word clouds.</p><p><strong>Results: </strong>Most AEs were identified in 2021, with fewer in 2022. AEs observed using the web app were consistent with AEs communicated by health authorities shortly before or within the same period.</p><p><strong>Conclusions: </strong>Monitoring the web and social media provides opportunities to observe AEs that may be related to the use of COVID-19 vaccines. The presented analysis demonstrates the ability to use web content and social media as a data source that could contribute to the early observation of AEs and enhance postmarketing surveillance. It could help to adjust signal detection strategies and communication with external stakeholders, contributing to increased confidence in vaccine safety monitoring.</p>","PeriodicalId":73554,"journal":{"name":"JMIR infodemiology","volume":"4 ","pages":"e53424"},"PeriodicalIF":3.5,"publicationDate":"2024-12-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11699502/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142866461","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}