infoveillance

信息监控
  • 文章类型: Journal Article
    背景:疫苗犹豫是一种日益严重的全球健康威胁,越来越多地通过对社交媒体平台的监测和分析进行研究。一个研究不足的领域是回声室和有影响力的用户对社交网络中疫苗信息传播的影响。评估回声室的时间发展以及关键用户对其增长的影响为防止疫苗犹豫增加的有效沟通策略提供了宝贵的见解。这也符合世界卫生组织(WHO)的信息群体学研究议程,旨在为社会倾听提出新的方法。
    目的:使用台湾论坛的数据,这项研究旨在研究有影响力的用户的参与模式,在不同的COVID-19立场内和跨不同的COVID-19立场,有助于随着时间的推移形成回声室。
    方法:这项研究的数据来自台湾一个名为PTT的论坛。“流言蜚语”子论坛上所有与疫苗相关的帖子都是在2021年1月至2022年12月期间使用关键字“疫苗”进行的。“构建了一个多层网络模型来评估回声室的存在。每一层代表疫苗接种前,疫苗犹豫,或基于特定标准的抗接种帖子。层级别度量,如平均多样性和斯皮尔曼等级相关性,用于测量倒角。要了解网络中有影响力的用户或关键节点的行为,分析了高多样性和强硬线节点的活性。
    结果:总体而言,前接种和抗接种层强烈极化。这种趋势是暂时的,在2021年11月之后变得更加明显。不同的节点主要参与与疫苗接种主题相关的讨论,接受评论并为他们做出贡献。与抗激发层的相互作用相对较小,可能是由于它的尺寸较小,这表明该论坛是一个“健康的社区”。“总的来说,不同的节点表现出交叉的参与。相比之下,疫苗犹豫层和抗感染层的强硬派在自己的社区内更积极地发表评论。这种趋势是暂时的,在Omicron爆发期间显示出增长。随着时间的推移,强硬派活动可能会加强他们的立场。因此,有相反的倒角和交叉的力量。
    结论:应努力在抗植层中缓和强硬派和有影响力的节点,并支持从事跨领域交流的疫苗接种使用者。这项研究有几个局限性。一是使用平台的偏向,另一个是缺乏对“影响力”的全面定义。“为了解决这些问题,可以跨不同平台进行比较研究,应该探索各种影响力指标。此外,通过网络模拟和回归分析检查有影响力的用户对网络结构和分房的影响提供了更强大的见解。该研究还缺乏对排骨趋势背后原因的解释。进行内容分析可以帮助了解参与的性质,并告知干预措施以解决回声室问题。这些方法与世卫组织传染病研究议程保持一致并进一步发展。
    BACKGROUND: Vaccine hesitancy is a growing global health threat that is increasingly studied through the monitoring and analysis of social media platforms. One understudied area is the impact of echo chambers and influential users on disseminating vaccine information in social networks. Assessing the temporal development of echo chambers and the influence of key users on their growth provides valuable insights into effective communication strategies to prevent increases in vaccine hesitancy. This also aligns with the World Health Organization\'s (WHO) infodemiology research agenda, which aims to propose new methods for social listening.
    OBJECTIVE: Using data from a Taiwanese forum, this study aims to examine how engagement patterns of influential users, both within and across different COVID-19 stances, contribute to the formation of echo chambers over time.
    METHODS: Data for this study come from a Taiwanese forum called PTT. All vaccine-related posts on the \"Gossiping\" subforum were scraped from January 2021 to December 2022 using the keyword \"vaccine.\" A multilayer network model was constructed to assess the existence of echo chambers. Each layer represents either provaccination, vaccine hesitant, or antivaccination posts based on specific criteria. Layer-level metrics, such as average diversity and Spearman rank correlations, were used to measure chambering. To understand the behavior of influential users-or key nodes-in the network, the activity of high-diversity and hardliner nodes was analyzed.
    RESULTS: Overall, the provaccination and antivaccination layers are strongly polarized. This trend is temporal and becomes more apparent after November 2021. Diverse nodes primarily participate in discussions related to provaccination topics, both receiving comments and contributing to them. Interactions with the antivaccination layer are comparatively minimal, likely due to its smaller size, suggesting that the forum is a \"healthy community.\" Overall, diverse nodes exhibit cross-cutting engagement. By contrast, hardliners in the vaccine hesitant and antivaccination layers are more active in commenting within their own communities. This trend is temporal, showing an increase during the Omicron outbreak. Hardliner activity potentially reinforces their stances over time. Thus, there are opposing forces of chambering and cross-cutting.
    CONCLUSIONS: Efforts should be made to moderate hardliner and influential nodes in the antivaccination layer and to support provaccination users engaged in cross-cutting exchanges. There are several limitations to this study. One is the bias of the platform used, and another is the lack of a comprehensive definition of \"influence.\" To address these issues, comparative studies across different platforms can be conducted, and various metrics of influence should be explored. Additionally, examining the impact of influential users on network structure and chambering through network simulations and regression analysis provides more robust insights. The study also lacks an explanation for the reasons behind chambering trends. Conducting content analysis can help to understand the nature of engagement and inform interventions to address echo chambers. These approaches align with and further the WHO infodemic research agenda.
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  • 文章类型: Journal Article
    这项观察性研究的目的是评估专用国家监测系统(ISS数据)与互联网上的搜索相比,意大利大多数报告的虫媒病毒病的潜在流行病学趋势。评估Google和Wikipedia中的用户搜索与真实案例之间是否存在相关性/关联。该研究考虑了从2012年6月到2023年12月的时间间隔。我们使用了以下意大利语搜索词:\"VirusToscana\",“西尼罗病毒”(西尼罗河病毒英文),\"Encefalitetrasmesadazecche\"(TickBorne脑炎英文),和“登革热”。我们将GoogleTrends和Wikipedia的数据重叠起来进行线性回归和相关性分析。适当时使用Pearson相关系数(r)或Spearman等级相关系数(rho)进行统计分析。ISS数据与维基百科或GT之间的所有相关性均具有统计学意义。登革热GT和ISS(rho=0.71)以及TBEGT和ISS(rho=0.71)的相关性很强,而其余相关性的r和rho值在0.32和0.67之间,显示出中等的时间相关性。观察到的相关性和回归模型为未来的研究提供了基础,鼓励对数字信息寻求行为和疾病患病率之间的动态进行更细致的探索。
    The purpose of this observational study was to evaluate the potential epidemiological trend of arboviral diseases most reported in Italy by the dedicated national surveillance system (ISS data) compared to searches on the internet, assessing whether a correlation/association between users\' searches in Google and Wikipedia and real cases exists. The study considers a time interval from June 2012 to December 2023. We used the following Italian search terms: \"Virus Toscana\", \"Virus del Nilo occidentale\" (West Nile Virus in English), \"Encefalite trasmessa da zecche\" (Tick Borne encephalitis in English), and \"Dengue\". We overlapped Google Trends and Wikipedia data to perform a linear regression and correlation analysis. Statistical analyses were performed using Pearson\'s correlation coefficient (r) or Spearman\'s rank correlation coefficient (rho) as appropriate. All the correlations between the ISS data and Wikipedia or GT exhibited statistical significance. The correlations were strong for Dengue GT and ISS (rho = 0.71) and TBE GT and ISS (rho = 0.71), while the remaining correlations had values of r and rho between 0.32 and 0.67, showing a moderate temporal correlation. The observed correlations and regression models provide a foundation for future research, encouraging a more nuanced exploration of the dynamics between digital information-seeking behavior and disease prevalence.
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  • 文章类型: Journal Article
    The exponential increase in internet use and the consequent surge in data generation present both opportunities and challenges for public health. Infodemiology, an emerging field at the intersection of information science and public health, seeks to harness the vast amounts of health-related data generated online for public health benefits. This paper provides a comprehensive overview of infodemiology, examining its development, methodologies, and potential to address public health challenges. We discuss the role of infodemiology in identifying and mitigating the spread of misinformation, especially in the context of the COVID-19 pandemic, which underscored the dangers of the \"infodemic\" - an overabundance of information, both accurate and not, that complicates public health responses. Through both demand and supply-based studies, infodemiology offers unique insights into health trends, misinformation dynamics, and the digital behaviors of health information seekers. Tools such as sentiment analysis are highlighted as essential in navigating the vast digital landscape for real-time health data analysis. Despite the potential of infodemiology, challenges such as data overload or misinformation. The paper concludes by emphasizing the importance of interdisciplinary collaboration, the development of advanced analytical tools, and the need for guidelines to maximize the field\'s impact on public health policy and practice.
    Wykładniczy wzrost używania internetu oraz wynikający z tego wzrost ilości generowanych danych stwarza zarówno szanse, jak i wyzwania dla zdrowia publicznego. Infodemiologia, niedawno powstała dziedzina, pojawia się na przecięciu nauki związanych z informacją i zdrowia publicznego. Dąży do wykorzystania ogromnych ilości danych zdrowotnych generowanych w internecie na korzyść zdrowia publicznego. Niniejszy artykuł dostarcza kompleksowy przegląd infodemiologii, badając jej rozwój, metodologie oraz potencjał w adresowaniu wyzwań zdrowia publicznego. Omówiona zostaje rola infodemiologii w identyfikowaniu i zapobieganiu rozprzestrzeniania się dezinformacji, szczególnie w kontekście pandemii COVID-19, która podkreśliła niebezpieczeństwa \"infodemii\" - nadmiaru informacji, zarówno prawdziwych, jak i fałszywych, utrudniających działania zdrowia publicznego. Poprzez badania oparte na popycie i podaży, infodemiologia oferuje unikalną perspektywę na trendy w zdrowiu, dynamikę dezinformacji oraz cyfrowe zachowania osób szukających informacji zdrowotnych. Narzędzia takie jak analiza sentymentu są wskazane jako istotne dla analizy danych zdrowotnych w czasie rzeczywistym. Pomimo potencjału infodemiologii, omówione są wyzwania takie jak przeciążenie danymi, czy dezinformacja. Artykuł kończy się podkreśleniem znaczenia interdyscyplinarnej współpracy, rozwoju zaawansowanych narzędzi analitycznych oraz potrzeby wytycznych, aby maksymalizować wpływ tej dziedziny na politykę i praktykę zdrowia publicznego.
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  • 文章类型: Journal Article
    UNASSIGNED: In den letzten Jahren ist eine Zunahme von Hauttumoren zu verzeichnen. Ziel dieser Studie war es daher, die Repräsentation von Hautkrebs im öffentlichen Bewusstsein weltweit und in Deutschland zu untersuchen und festzustellen, ob der Skin Cancer Awareness Month in den Suchinteressen der internetnutzenden Bevölkerung in gleicher Weise wie der Breast Cancer Awareness Month weltweit repräsentiert ist.
    UNASSIGNED: In dieser Studie wurden die Daten von Google Trends verwendet, um den Grad der öffentlichen Aufmerksamkeit für verschiedene Tumorentitäten und Hautkrebsarten weltweit und in Deutschland zu ermitteln.
    UNASSIGNED: Die Ergebnisse dieser Analyse zeigten deutlich ein hohes Niveau für das relative öffentliche Suchinteresse am Thema Brustkrebs weltweit im Sensibilisierungsmonat Oktober. Weltweit und in Deutschland war ein gewisser Anstieg des Suchinteresses beziehungsweise ein gewisser saisonaler Effekt um den Sensibilisierungsmonat Mai für Hautkrebs festzustellen. So zeigte die Analyse beispielsweise ein Suchinteresse im Mai und während der Sommermonate in Deutschland.
    UNASSIGNED: Es ist wahrscheinlich, dass die Bevölkerung, zum Beispiel in Deutschland, weiterhin von einer noch stärkeren Betonung des Themas Hautkrebs profitieren könnte.
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  • 文章类型: Journal Article
    目的:近年来,皮肤癌增加了。因此,这项研究的目的是调查皮肤癌在全球和德国公众意识中的代表性,并确定皮肤癌宣传月是否以与全球乳腺癌宣传月相同的方式代表互联网使用人群的搜索兴趣。
    方法:在本研究中,Google趋势数据用于跟踪全球和德国不同肿瘤实体和皮肤癌类型的公众意识水平。
    结果:该分析的结果清楚地表明,在10月的意识月,全球范围内对乳腺癌的相对公众搜索兴趣很高。在全球和德国,在5月的皮肤癌意识月前后,搜索兴趣有一定的增加和一定的季节性影响。例如,分析显示,5月和夏季在德国的搜索兴趣。
    结论:很可能,例如在德国,可能会进一步受益于对皮肤癌主题的更多重视。
    OBJECTIVE: In recent years, there has been an increase in skin cancer. The aim of this study was therefore to investigate the representation of skin cancer in public awareness worldwide and in Germany, and to determine whether Skin Cancer Awareness Month is represented in the search interests of the Internet-using population in the same way as Breast Cancer Awareness Month worldwide.
    METHODS: In this study, Google Trends data were used to track levels of public awareness for different tumor entities and skin cancer types worldwide and for Germany.
    RESULTS: The results of this analysis clearly showed a high level of relative public search interest in breast cancer worldwide in the awareness month of October. Worldwide and in Germany, there was a certain increase in search interest and a certain seasonal effect around the May awareness month for skin cancer. For example, the analysis showed a search interest in May and during the summer months in Germany.
    CONCLUSIONS: It is likely that the population, for example in Germany, may benefit further from an even greater emphasis on the topic of skin cancer.
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  • 文章类型: Journal Article
    背景:尽管研究人员广泛研究了在大流行期间有关新型冠状病毒的错误信息的快速产生和传播,许多其他与健康相关的话题正在用错误信息污染互联网,这些错误信息没有得到太多的关注。
    目的:这项研究旨在评估万维网上最受欢迎的医疗内容的覆盖范围,超出了大流行的范围。我们对2021年和2022年的主题和可信度进行了评估,遵循循证医学的原则,并由经验丰富的临床医生进行评估。
    方法:我们使用274个关键字通过BuzzSumo企业应用程序进行网页搜索。这些关键词是根据对医生进行的调查得出的医学主题选择的。搜索参数被限制在两个不同的日期范围内:(1)2021年1月1日至2021年12月31日;(2)2022年1月1日至2022年12月31日。我们的搜索特别限于波兰语的网页,并按指定的日期范围进行过滤。该分析涵盖了2021年检索的161个网页和2022年检索的105个网页。每个网页都经过了经验丰富的医生的审查,以评估其可信度,符合循证医学标准。此外,我们收集了与网页相关的社交媒体参与数据,考虑到Facebook等平台,Pinterest,Reddit,和Twitter。
    结果:2022年,与COVID-19相关的不可靠信息的患病率与2021年相比出现了显着下降。具体来说,讨论COVID-19和一般疫苗接种的不可信网页的百分比从57%(43/76)下降到24%(6/25)和42%(10/25)下降到30%(3/10),分别。然而,在同一时期,在社交媒体上传播与其他医学主题有关的不可信任内容的数量大幅增加。包含胆固醇的不可信网页的百分比,他汀类药物,心脏病学从11%(3/28)上升到26%(9/35),从18%(5/28)上升到26%(6/23),分别。
    结论:在COVID-19大流行期间为遏制错误信息的传播所做的努力似乎取得了积极的成果。然而,我们的分析表明,这些干预措施需要在既有医学受试者和新兴医学受试者中一致实施.看来,随着对这一流行病的兴趣减弱,其他话题越来越突出,本质上是“填补真空”,并需要采取持续的措施来解决更广泛的健康相关主题的错误信息。
    BACKGROUND: Although researchers extensively study the rapid generation and spread of misinformation about the novel coronavirus during the pandemic, numerous other health-related topics are contaminating the internet with misinformation that have not received as much attention.
    OBJECTIVE: This study aims to gauge the reach of the most popular medical content on the World Wide Web, extending beyond the confines of the pandemic. We conducted evaluations of subject matter and credibility for the years 2021 and 2022, following the principles of evidence-based medicine with assessments performed by experienced clinicians.
    METHODS: We used 274 keywords to conduct web page searches through the BuzzSumo Enterprise Application. These keywords were chosen based on medical topics derived from surveys administered to medical practitioners. The search parameters were confined to 2 distinct date ranges: (1) January 1, 2021, to December 31, 2021; (2) January 1, 2022, to December 31, 2022. Our searches were specifically limited to web pages in the Polish language and filtered by the specified date ranges. The analysis encompassed 161 web pages retrieved in 2021 and 105 retrieved in 2022. Each web page underwent scrutiny by a seasoned doctor to assess its credibility, aligning with evidence-based medicine standards. Furthermore, we gathered data on social media engagements associated with the web pages, considering platforms such as Facebook, Pinterest, Reddit, and Twitter.
    RESULTS: In 2022, the prevalence of unreliable information related to COVID-19 saw a noteworthy decline compared to 2021. Specifically, the percentage of noncredible web pages discussing COVID-19 and general vaccinations decreased from 57% (43/76) to 24% (6/25) and 42% (10/25) to 30% (3/10), respectively. However, during the same period, there was a considerable uptick in the dissemination of untrustworthy content on social media pertaining to other medical topics. The percentage of noncredible web pages covering cholesterol, statins, and cardiology rose from 11% (3/28) to 26% (9/35) and from 18% (5/28) to 26% (6/23), respectively.
    CONCLUSIONS: Efforts undertaken during the COVID-19 pandemic to curb the dissemination of misinformation seem to have yielded positive results. Nevertheless, our analysis suggests that these interventions need to be consistently implemented across both established and emerging medical subjects. It appears that as interest in the pandemic waned, other topics gained prominence, essentially \"filling the vacuum\" and necessitating ongoing measures to address misinformation across a broader spectrum of health-related subjects.
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  • 文章类型: Journal Article
    互联网是获取健康相关信息的重要门户,通过网络查询产生的数据越来越多地被用作监测和预测传染病的补充来源,它们可能部分解决漏报问题。在这项研究中,我们评估了与蜱传脑炎(TBE)相关的互联网搜索量是否可作为意大利TBE监测的补充工具.TBE相关信息的月度Google趋势(GT)数据是在2017年1月至2022年9月期间提取的,对应于意大利可用的TBE通知时间序列。通过应用具有或不具有GT数据的季节性自回归综合移动平均(SARIMA)模型来进行时间序列建模。相对于tick位的搜索词最好地反映了观察到的TBE病例的时间分布,相关系数为0.81(95%CI:0.71-0.88)。特别是,报告的TBE病例数和GT搜索均主要发生在夏季.6年中的4年中,疾病通知的高峰与Google搜索的高峰相吻合。一旦校准,将具有或不具有GT数据的SARIMA模型应用于验证集。通过使用GT数据进行的模型进行的回顾性预测与较低的预测误差相关,并且准确地预测了峰值时间。相比之下,传统的SARIMA模型将TBE通知的实际数量低估了65%。及时性,容易获得,低成本和透明度使与TBE相关的互联网搜索查询的监控成为意大利传统TBE监控方法的一个有希望的补充。
    The Internet is an important gateway for accessing health-related information, and data generated through web queries have been increasingly used as a complementary source for monitoring and forecasting of infectious diseases and they may partially address the issue of underreporting. In this study, we assessed whether tick-borne encephalitis (TBE)-related Internet search volume may be useful as a complementary tool for TBE surveillance in Italy. Monthly Google Trends (GT) data for TBE-related information were extracted for the period between January 2017 and September 2022, corresponding to the available time series of TBE notifications in Italy. Time series modeling was performed by applying seasonal autoregressive integrated moving average (SARIMA) models with or without GT data. The search terms relative to tick bites reflected best the observed temporal distribution of TBE cases, showing a correlation coefficient of 0.81 (95 % CI: 0.71-0.88). Particularly, both the reported number of TBE cases and GT searches occurred mainly during the summer. The peak of disease notifications coincided with that of Google searches in 4 of 6 years. Once calibrated, SARIMA models with or without GT data were applied to a validation set. Retrospective forecast made by the model with GT data was associated with a lower prediction error and accurately predicted the peak timing. By contrast, the traditional SARIMA model underestimated the actual number of TBE notifications by 65 %. Timeliness, easy availability, low cost and transparency make monitoring of the TBE-related Internet search queries a promising addition to the traditional methods of TBE surveillance in Italy.
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  • 文章类型: Journal Article
    尽管存在与数据质量相关的挑战,代表性,以及人工智能驱动工具的准确性,商业上可用的社交收听平台具有许多需要用于在线生态系统中人类乳头瘤病毒疫苗接种错误信息的数字公共卫生监测的属性。
    Despite challenges related to the data quality, representativeness, and accuracy of artificial intelligence-driven tools, commercially available social listening platforms have many of the attributes needed to be used for digital public health surveillance of human papillomavirus vaccination misinformation in the online ecosystem.
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  • 文章类型: Journal Article
    传染性疾病正在成为主要的公共卫生问题。这项研究的目的是通过在互联网上的搜索来评估意大利四种传染性发疹疾病的潜在流行病学趋势。
    我们使用了以下意大利语搜索词:\'Sestamalattia\'(第六疾病,在英语中),\'厄立特里亚Infetivo\'(也知道\'Quintamalattia\'在意大利语中;在英语第五疾病),\'Quartamalattia\'(英语中的第四疾病)和\'Scarlattina\'(英语中的猩红热)。我们将GoogleTrends和Wikipedia的数据重叠起来进行线性回归和相关性分析。使用Spearman等级相关系数(rho)进行统计分析。研究期为2015年7月至2022年12月。
    所考虑的疾病具有季节性趋势,并且GT和Wikipedia之间的搜索峰值重叠。在GT和维基百科搜索趋势之间观察到时间相关性。谷歌趋势互联网搜索数据显示与维基百科有很强的相关性,第五疾病的rho具有统计学意义(rho=0.78),第四疾病(rho=0.76)和猩红热(rho=0.77),第六疾病的中度相关性(rho=0.32)。
    使用Google和Wikipedia进行传染病搜索可用于公共卫生监测,并帮助政策制定者实施针对人群的预防和信息计划,此外,搜索量的增加可能是发现疫情的早期预警。
    Contagious exanthematous diseases are becoming a major public health problem. The purpose of this study was to evaluate the potential epidemiological trend of four infectious exanthematous diseases in Italy through the searches on the internet.
    We used the following Italian search term: \'Sesta malattia\' (Sixth Disease, in English), \'Eritema Infettivo\' (also knows \'Quinta malattia\' in Italian; Fifth Disease in English), \'Quarta malattia\' (Fourth Disease in English) and \'Scarlattina\' (Scarlet fever in English). We overlapped Google Trends and Wikipedia data to perform a linear regression and correlation analysis. Statistical analyses were performed using the Spearman\'s rank correlation coefficient (rho). The study period is between July 2015 and December 2022.
    The diseases considered have a seasonal trend and the search peaks between GT and Wikipedia overlap. A temporal correlation was observed between GT and Wikipedia search trends. Google Trends Internet search data showed strong correlation with Wikipedia with a rho statistically significant for Fifth disease (rho = 0.78), Fourth disease (rho = 0.76) and Scarlet-fever (rho = 0.77), moderate correlation for Sixth disease (rho = 0.32).
    Infectious disease searches using Google and Wikipedia can be useful for public health surveillance and help policy makers implement prevention and information programs for the population, in addition to the fact that increases in searches could represent an early warning in the detection of outbreaks.
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  • 文章类型: Journal Article
    背景:系统性红斑狼疮(SLE)是一种慢性自身免疫性炎症性疾病,累及各种器官,具有广泛的临床表现。皮肤红斑狼疮(CLE)可以表现为SLE的特征或独立的皮肤疾病。在患有狼疮的个体中,与健康相关的生活质量(HRQoL)经常受到损害。了解患者患病时的观点对于有效满足他们未满足的需求至关重要。社交倾听是一种有前途的新方法,可以提供对患有疾病(狼疮)的患者的经历的见解,并利用这些见解来告知药物开发策略,以满足他们未满足的需求。
    目的:本研究的目的是探索SLE和CLE患者的生活体验。包括他们的疾病和治疗经验,HRQoL,和未满足的需求,正如在博客和论坛等基于网络的社交媒体平台中讨论的那样。
    方法:从2019年10月至2022年1月,在13个公开的英语社交媒体平台上进行了一项回顾性探索性社会听力研究。采用自然语言处理和知识图谱标注技术对数据进行处理,格式,匿名,并在将它们喂给Pharos之前对它们进行算法注释,Semalytix专有的数据可视化和分析平台,作进一步分析。Pharos用于生成描述性数据统计,提供对个体患者体验变量大小的洞察,它们在变量大小上的差异,和算法标记的变量之间的关联。
    结果:这项研究纳入了3834名通过算法确定为狼疮患者的个体中的45,554个帖子。其中,1925(撰写5636个帖子)和106(撰写243个帖子)患者被确定为患有SLE和CLE,分别。患者经常提到与SLE和CLE有关的各种症状,包括疼痛,疲劳,和皮疹;疼痛和疲劳被确定为HRQoL受损的主要驱动因素。HRQoL受影响最大的方面包括“移动性”,“\”认知能力,“”休闲娱乐,“和”睡眠和休息。“现有的药物干预措施对狼疮最繁重的症状管理不善。相反,非药物治疗,比如锻炼和冥想,常与HRQoL改善相关。
    结论:狼疮患者报告了症状和HRQoL方面的复杂相互作用,这些相互作用相互影响。这项研究表明,社交倾听是一种有效的方法来收集对患者体验的见解,preferences,和未满足的需求,在药物开发过程中可以考虑开发有效的疗法并改善疾病管理。
    BACKGROUND: Systemic lupus erythematosus (SLE) is a chronic autoimmune inflammatory disease affecting various organs with a wide range of clinical manifestations. Cutaneous lupus erythematosus (CLE) can manifest as a feature of SLE or an independent skin ailment. Health-related quality of life (HRQoL) is frequently compromised in individuals living with lupus. Understanding patients\' perspectives when living with a disease is crucial for effectively meeting their unmet needs. Social listening is a promising new method that can provide insights into the experiences of patients living with their disease (lupus) and leverage these insights to inform drug development strategies for addressing their unmet needs.
    OBJECTIVE: The objective of this study is to explore the experience of patients living with SLE and CLE, including their disease and treatment experiences, HRQoL, and unmet needs, as discussed in web-based social media platforms such as blogs and forums.
    METHODS: A retrospective exploratory social listening study was conducted across 13 publicly available English-language social media platforms from October 2019 to January 2022. Data were processed using natural language processing and knowledge graph tagging technology to clean, format, anonymize, and annotate them algorithmically before feeding them to Pharos, a Semalytix proprietary data visualization and analysis platform, for further analysis. Pharos was used to generate descriptive data statistics, providing insights into the magnitude of individual patient experience variables, their differences in the magnitude of variables, and the associations between algorithmically tagged variables.
    RESULTS: A total of 45,554 posts from 3834 individuals who were algorithmically identified as patients with lupus were included in this study. Among them, 1925 (authoring 5636 posts) and 106 (authoring 243 posts) patients were identified as having SLE and CLE, respectively. Patients frequently mentioned various symptoms in relation to SLE and CLE including pain, fatigue, and rashes; pain and fatigue were identified as the main drivers of HRQoL impairment. The most affected aspects of HRQoL included \"mobility,\" \"cognitive capabilities,\" \"recreation and leisure,\" and \"sleep and rest.\" Existing pharmacological interventions poorly managed the most burdensome symptoms of lupus. Conversely, nonpharmacological treatments, such as exercise and meditation, were frequently associated with HRQoL improvement.
    CONCLUSIONS: Patients with lupus reported a complex interplay of symptoms and HRQoL aspects that negatively influenced one another. This study demonstrates that social listening is an effective method to gather insights into patients\' experiences, preferences, and unmet needs, which can be considered during the drug development process to develop effective therapies and improve disease management.
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