Data Privacy

数据隐私
  • 文章类型: Journal Article
    疫苗犹豫研究是公共卫生企业的重要组成部分,近年来,通过常规儿童免疫接种可预防的传染病发病率一直在增加。因此,重要的是要估计人口各个亚组中“从未接种疫苗”的比例,以便成功地针对干预措施以提高儿童疫苗接种率。然而,由于隐私问题,可能难以获得执行适当的事件发生时间分析所需的个体患者数据(IPD):州级免疫信息服务机构可能只愿意与研究人员共享汇总数据.我们提出了用于分析汇总生存数据的统计方法,该方法可以基于仅依靠汇总统计数据的混合物固化模型对数似然函数的多项式逼近来容纳固化分数。我们通过模拟研究研究该方法的性能,并将其应用于研究提醒/回忆方法以改善人乳头瘤病毒(HPV)疫苗接种的现实世界数据集。当存在对拟合复杂的基于似然的模型的兴趣但是IPD由于数据隐私或其他问题而不可用时,所提出的方法可以被推广用于使用。
    Research into vaccine hesitancy is a critical component of the public health enterprise, as rates of communicable diseases preventable by routine childhood immunization have been increasing in recent years. It is therefore important to estimate proportions of \"never-vaccinators\" in various subgroups of the population in order to successfully target interventions to improve childhood vaccination rates. However, due to privacy issues, it may be difficult to obtain individual patient data (IPD) needed to perform the appropriate time-to-event analyses: state-level immunization information services may only be willing to share aggregated data with researchers. We propose statistical methodology for the analysis of aggregated survival data that can accommodate a cured fraction based on a polynomial approximation of the mixture cure model log-likelihood function relying only on summary statistics. We study the performance of the method through simulation studies and apply it to a real-world data set from a study examining reminder/recall approaches to improve human papillomavirus (HPV) vaccination uptake. The proposed methods may be generalized for use when there is interest in fitting complex likelihood-based models but IPD is unavailable due to data privacy or other concerns.
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    自2020年美国人口普查宣布使用差分隐私(DP)以来,它一直是公众关注的焦点。虽然DP算法大大改善了为人口普查受访者提供的机密性保护,人们对受DP保护的人口普查数据的准确性提出了担忧。DP的使用在多大程度上扭曲了得出推动小人口政策的推论的能力,特别是边缘化社区,一直是研究人员和政策制定者特别关注的问题。毕竟,关于边缘化人口的不准确信息往往会产生加剧而不是改善社会不平等的政策。因此,计算机科学专家专注于开发有助于实现公平隐私的机制,即,减轻隐私保护引入的数据扭曲的机制,以确保所有群体的公平结果和利益,尤其是边缘化群体。我们的论文通过强调包容性沟通在通过部署差异化私人系统的所有阶段确保所有社会群体的公平结果方面的重要性,扩展了关于公平隐私的对话。我们将公平DP概念化为设计,通信,以及确保公平结果的DP算法的实施。因此,除了采用计算机科学家将权益参数纳入DP算法的建议外,我们建议组织在整个设计过程中也促进包容性沟通是至关重要的,发展,以及DP算法的实施阶段,以确保其对社会群体产生公平的影响,并且不妨碍纠正社会不平等。为了证明沟通对公平发展的重要性,我们对DP被采用为2020年美国人口普查的最新披露回避系统的过程进行了案例研究。借鉴包容性科学传播(ISC)框架,我们研究了人口普查局的沟通策略在多大程度上鼓励了不同用户群体的参与,这些用户利用十年一次的人口普查数据进行研究和政策制定。我们的分析提供了一些经验教训,可供其他有兴趣将公平DP方法纳入其数据收集实践的政府组织使用。
    Differential privacy (DP) has been in the public spotlight since the announcement of its use in the 2020 U.S. Census. While DP algorithms have substantially improved the confidentiality protections provided to Census respondents, concerns have been raised about the accuracy of the DP-protected Census data. The extent to which the use of DP distorts the ability to draw inferences that drive policy about small-populations, especially marginalized communities, has been of particular concern to researchers and policy makers. After all, inaccurate information about marginalized populations can often engender policies that exacerbate rather than ameliorate social inequities. Consequently, computer science experts have focused on developing mechanisms that help achieve equitable privacy, i.e., mechanisms that mitigate the data distortions introduced by privacy protections to ensure equitable outcomes and benefits for all groups, particularly marginalized groups. Our paper extends the conversation on equitable privacy by highlighting the importance of inclusive communication in ensuring equitable outcomes for all social groups through all the stages of deploying a differentially private system. We conceptualize Equitable DP as the design, communication, and implementation of DP algorithms that ensure equitable outcomes. Thus, in addition to adopting computer scientists\' recommendations of incorporating equity parameters within DP algorithms, we suggest that it is critical for an organization to also facilitate inclusive communication throughout the design, development, and implementation stages of a DP algorithm to ensure it has an equitable impact on social groups and does not hinder the redressal of social inequities. To demonstrate the importance of communication for Equitable DP, we undertake a case study of the process through which DP was adopted as the newest disclosure avoidance system for the 2020 U.S. Census. Drawing on the Inclusive Science Communication (ISC) framework, we examine the extent to which the Census Bureau\'s communication strategies encouraged engagement across the diverse groups of users that employ the decennial Census data for research and policy making. Our analysis provides lessons that can be used by other government organizations interested in incorporating the Equitable DP approach in their data collection practices.
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  • 文章类型: Journal Article
    背景:在突发卫生事件期间,有效的信息技术管理已成为一项首要挑战。一个以快速变化的信息生态系统为标志的新时代,加上错误信息和虚假信息的广泛传播,放大了问题的复杂性。为使传染病管理措施有效,可接受,值得信赖,需要一个健全的道德考虑框架。
    目的:本系统范围审查旨在确定和分析与信息管理相关的伦理考虑和程序原则,最终提高这些做法的有效性,并增加利益相关者的信任,这些利益相关者执行信息流行病管理做法,以保障公众健康为目标。
    方法:该综述涉及对2002年至2022年与疾病管理中的伦理考虑相关的文献进行了全面审查,这些文献来自PubMed的出版物,Scopus,和WebofScience。政策文件和相关材料被纳入搜索战略。论文根据纳入和排除标准进行筛选,根据PRISMA(系统审查和荟萃分析的首选报告项目)指南,对核心主题领域进行了系统识别和分类。我们分析了文献,以确定实质性的道德原则,这些原则对于指导信息管理和社会倾听领域的行动至关重要。以及相关的程序伦理原则。在这次审查中,我们考虑文献中广泛讨论的道德原则,比如股权,正义,或尊重自主权。然而,我们承认程序实践的存在和相关性,我们也认为这是道德原则或实践,当实施时,在确保尊重实质性道德原则的同时,提高信息管理的效力。
    结果:从103种出版物中提取,审查产生了几个与道德原则有关的关键发现,方法,和传染病管理背景下的实践指南。社区参与,通过教育赋权,包容性作为程序原则和实践出现,提高了沟通和社会倾听努力的质量和有效性,培养信任,一个关键的新兴主题和重要的道德原则。审查还强调了透明度的重要性,隐私,和数据收集中的网络安全。
    结论:这篇综述强调了伦理学在增强疾病控制效果方面的关键作用。从分析的文学主体来看,很明显,道德考虑是培养信任和信誉的重要工具,同时也促进了信息管理方法的中期和长期可行性。
    BACKGROUND: During health emergencies, effective infodemic management has become a paramount challenge. A new era marked by a rapidly changing information ecosystem, combined with the widespread dissemination of misinformation and disinformation, has magnified the complexity of the issue. For infodemic management measures to be effective, acceptable, and trustworthy, a robust framework of ethical considerations is needed.
    OBJECTIVE: This systematic scoping review aims to identify and analyze ethical considerations and procedural principles relevant to infodemic management, ultimately enhancing the effectiveness of these practices and increasing trust in stakeholders performing infodemic management practices with the goal of safeguarding public health.
    METHODS: The review involved a comprehensive examination of the literature related to ethical considerations in infodemic management from 2002 to 2022, drawing from publications in PubMed, Scopus, and Web of Science. Policy documents and relevant material were included in the search strategy. Papers were screened against inclusion and exclusion criteria, and core thematic areas were systematically identified and categorized following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines. We analyzed the literature to identify substantive ethical principles that were crucial for guiding actions in the realms of infodemic management and social listening, as well as related procedural ethical principles. In this review, we consider ethical principles that are extensively deliberated upon in the literature, such as equity, justice, or respect for autonomy. However, we acknowledge the existence and relevance of procedural practices, which we also consider as ethical principles or practices that, when implemented, enhance the efficacy of infodemic management while ensuring the respect of substantive ethical principles.
    RESULTS: Drawing from 103 publications, the review yielded several key findings related to ethical principles, approaches, and guidelines for practice in the context of infodemic management. Community engagement, empowerment through education, and inclusivity emerged as procedural principles and practices that enhance the quality and effectiveness of communication and social listening efforts, fostering trust, a key emerging theme and crucial ethical principle. The review also emphasized the significance of transparency, privacy, and cybersecurity in data collection.
    CONCLUSIONS: This review underscores the pivotal role of ethics in bolstering the efficacy of infodemic management. From the analyzed body of literature, it becomes evident that ethical considerations serve as essential instruments for cultivating trust and credibility while also facilitating the medium-term and long-term viability of infodemic management approaches.
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  • 文章类型: Journal Article
    背景:COVID-19大流行引发了无数面向用户的移动应用程序,以帮助抗击大流行(“COVID-19缓解应用程序”)。这些应用程序一直处于数据隐私讨论的中心,因为它们收集,使用,甚至保留用户的敏感个人数据(例如,医疗记录和位置数据)。美国政府于2023年5月结束了其COVID-19紧急声明,这标志着一个独特的时间来全面调查数据隐私如何影响人们对整个大流行期间部署的各种COVID-19缓解应用程序的接受程度。
    目的:本研究旨在通过数据隐私的视角,为COVID-19缓解应用程序的健康数据隐私提供见解,并为未来部署公共卫生移动应用程序提供政策建议。这项研究通过应用上下文完整性的隐私框架,探索了人们对不同类型的COVID-19缓解应用程序的上下文接受度。具体来说,这项研究旨在确定影响人们在各种社会环境中接受数据共享和数据保留实践的因素。
    方法:通过在2023年2月的Prolific上招募一个简单的美国代表性样本(N=674),进行了一项基于网络的混合方法调查研究。该调查包括总共60个插图场景,代表了可以使用COVID-19缓解应用程序的现实社会环境。每个调查受访者回答了有关他们接受10个随机选择方案的问题。三个上下文完整性参数(属性,收件人,和传输原理)和受访者的基本人口统计作为独立变量进行控制。进行回归分析以确定影响人们通过这些应用程序接受初始数据共享和数据保留实践的因素。对调查的定性数据进行了分析,以支持统计结果。
    结果:许多上下文完整性参数值,上下文完整性参数值的成对组合,受访者的一些人口统计特征对他们在各种社交环境中使用COVID-19缓解应用程序的接受程度有重大影响。在某些情况下,受访者对数据保留实践的接受与对初始数据共享实践的接受不同。
    结论:这项研究表明,人们对使用各种COVID-19缓解应用程序的接受程度取决于特定的社会环境,包括数据类型(属性),数据的接收者(接收者),和数据使用的目的(传输原理)。这种接受在初始数据共享和数据保留实践之间可能有所不同,即使在相同的背景下。研究结果对未来的大流行缓解应用程序和更广泛的公共卫生移动应用程序在数据隐私和部署考虑方面产生了丰富的影响。
    BACKGROUND: The COVID-19 pandemic gave rise to countless user-facing mobile apps to help fight the pandemic (\"COVID-19 mitigation apps\"). These apps have been at the center of data privacy discussions because they collect, use, and even retain sensitive personal data from their users (eg, medical records and location data). The US government ended its COVID-19 emergency declaration in May 2023, marking a unique time to comprehensively investigate how data privacy impacted people\'s acceptance of various COVID-19 mitigation apps deployed throughout the pandemic.
    OBJECTIVE: This research aims to provide insights into health data privacy regarding COVID-19 mitigation apps and policy recommendations for future deployment of public health mobile apps through the lens of data privacy. This research explores people\'s contextual acceptance of different types of COVID-19 mitigation apps by applying the privacy framework of contextual integrity. Specifically, this research seeks to identify the factors that impact people\'s acceptance of data sharing and data retention practices in various social contexts.
    METHODS: A mixed methods web-based survey study was conducted by recruiting a simple US representative sample (N=674) on Prolific in February 2023. The survey includes a total of 60 vignette scenarios representing realistic social contexts that COVID-19 mitigation apps could be used. Each survey respondent answered questions about their acceptance of 10 randomly selected scenarios. Three contextual integrity parameters (attribute, recipient, and transmission principle) and respondents\' basic demographics are controlled as independent variables. Regression analysis was performed to determine the factors impacting people\'s acceptance of initial data sharing and data retention practices via these apps. Qualitative data from the survey were analyzed to support the statistical results.
    RESULTS: Many contextual integrity parameter values, pairwise combinations of contextual integrity parameter values, and some demographic features of respondents have a significant impact on their acceptance of using COVID-19 mitigation apps in various social contexts. Respondents\' acceptance of data retention practices diverged from their acceptance of initial data sharing practices in some scenarios.
    CONCLUSIONS: This study showed that people\'s acceptance of using various COVID-19 mitigation apps depends on specific social contexts, including the type of data (attribute), the recipients of the data (recipient), and the purpose of data use (transmission principle). Such acceptance may differ between the initial data sharing and data retention practices, even in the same context. Study findings generated rich implications for future pandemic mitigation apps and the broader public health mobile apps regarding data privacy and deployment considerations.
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  • 文章类型: Journal Article
    数字暴露通知是在COVID-19大流行期间使用的一种新颖的公共卫生干预措施,用于提醒用户可能的COVID-19暴露。我们寻求量化华盛顿州数字暴露通知系统的有效性,WA通知,以1年内避免的COVID-19病例数衡量。
    在维护个人隐私的同时,WANotify收集了可用于评估系统有效性的数据。本文使用这些和其他数据,并建立在以前的模型上,以估计WANotify避免的案例数量。由于WANotify报告的数据质量和广度的改善,一些模型参数的新估计是可能的。
    我们估计,在2021年3月1日至2022年2月28日的研究期间,WANotify在华盛顿州避免了64,000例(敏感性分析:35,000-92,000例)COVID-19病例。在此期间,估计产生了1,089,000个暴露通知,并向WANotify报告了155,000个病例。在研究期间的最后78天,每日活跃用户的中位数估计为1,740,000。
    我们相信WANotify减少了华盛顿州COVID-19大流行的影响,类似的系统可以减少未来传染病暴发的影响。
    UNASSIGNED: Digital exposure notifications are a novel public health intervention used during the COVID-19 pandemic to alert users of possible COVID-19 exposure. We seek to quantify the effectiveness of Washington State\'s digital exposure notification system, WA Notify, as measured by the number of COVID-19 cases averted during a 1-year period.
    UNASSIGNED: While maintaining individuals\' privacy, WA Notify collected data that could be used to evaluate the system\'s effectiveness. This article uses these and other data and builds on a previous model to estimate the number of cases averted by WA Notify. Novel estimates of some model parameters are possible because of improvements in the quality and breadth of data reported by WA Notify.
    UNASSIGNED: We estimate that WA Notify averted 64,000 (sensitivity analysis: 35,000-92,000) COVID-19 cases in Washington State during the study period from 1 March 2021 to 28 February 2022. During this period, there were an estimated 1,089,000 exposure notifications generated and 155,000 cases reported to WA Notify. During the last 78 days of the study period, the median estimated number of daily active users was 1,740,000.
    UNASSIGNED: We believe WA Notify reduced the impact of the COVID-19 pandemic in Washington State and that similar systems could reduce the impact of future communicable disease outbreaks.
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  • 文章类型: Journal Article
    由于担心RWD是否适合目的或具有足够的有效性以支持创建可信的RWE,因此将现实世界数据(RWD)用于医疗保健决策变得很复杂。随着监管机构开始使用真实世界证据(RWE)来告知有关治疗有效性和安全性的决策,需要一种有效的机制来筛选RWD的质量。首先,我们提供了RWD和RWE的概述。研究了美国和欧盟的数据质量框架(DQF),包括它们的尺寸和子尺寸。概念性DQF在特定评估标准上有一定的趋同。第二,我们描述了用于评估RWD来源质量的筛选标准列表.根据数字健康和人工智能(AI)的发展,RWD的管理和分析将继续发展。总之,本文对RWD和RWE在医疗保健决策中的利用提供了一个视角。它涵盖了RWD的类型和用途,数据质量框架(DQF),监管景观,以及RWE的潜在影响,以及更大程度地利用RWD来创建可信的RWE的挑战和机遇。
    The use of real-world data (RWD) for healthcare decision-making is complicated by concerns regarding whether RWD is fit-for-purpose or is of sufficient validity to support the creation of credible RWE. An efficient mechanism for screening the quality of RWD is needed as regulatory agencies begin to use real-world evidence (RWE) to inform decisions about treatment effectiveness and safety. First, we provide an overview of RWD and RWE. Data quality frameworks (DQFs) in the US and EU were examined, including their dimensions and subdimensions. There is some convergence of the conceptual DQFs on specific assessment criteria. Second, we describe a list of screening criteria for assessing the quality of RWD sources. The curation and analysis of RWD will continue to evolve in light of developments in digital health and artificial intelligence (AI). In conclusion, this paper provides a perspective on the utilization of RWD and RWE in healthcare decision-making. It covers the types and uses of RWD, data quality frameworks (DQFs), regulatory landscapes, and the potential impact of RWE, as well as the challenges and opportunities for the greater leveraging of RWD to create credible RWE.
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  • 文章类型: Review
    该项目旨在设计医疗保健中利用的新算法和技术,以确保人工智能系统中的数据隐私。为了增强其可信度,研究综述介绍了用于保护医疗数据隐私的各种现代方法和技术。该项目对医疗保健领域有关AI隐私保护的当前发展进行了实证研究,以编写有关该主题的坚定文献。
    This project seeks to devise novel algorithms and techniques leveraged in healthcare to guarantee data privacy in AI-powered systems. To bolster its credibility, the study review presents various modern approaches and technologies used to preserve data privacy of healthcare data. The project conducted an empirical study of the current development in healthcare regarding AI privacy protection to compile a steadfast literature on the subject.
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  • 文章类型: Journal Article
    精准医学正在通过根据临床定制个性化的医疗干预措施来改变精神病治疗,遗传,环境,和生活方式因素优化用药管理。这项研究调查了人工智能(AI)和机器学习(ML)如何解决将药物基因组学(PGx)整合到精神病护理中的关键挑战。在这种整合中,AI分析大量的基因组数据集,以识别与精神疾病相关的遗传标记。整合基因组的AI驱动模型,临床,和人口统计学数据显示,在预测重度抑郁障碍和双相情感障碍的治疗结果方面具有很高的准确性.这项研究还探讨了紧迫的挑战,并为在基因组精神病学中整合AI和ML提供了战略方向。强调道德考虑的重要性和个性化治疗的必要性。在电子健康记录中有效实施人工智能驱动的临床决策支持系统对于将PGx转化为常规精神病护理至关重要。未来的研究应该集中在开发增强型人工智能驱动的预测模型上,保护隐私的数据交换,和强大的信息系统,以优化患者的结果和推进精确医学在精神病学。
    Precision medicine is transforming psychiatric treatment by tailoring personalized healthcare interventions based on clinical, genetic, environmental, and lifestyle factors to optimize medication management. This study investigates how artificial intelligence (AI) and machine learning (ML) can address key challenges in integrating pharmacogenomics (PGx) into psychiatric care. In this integration, AI analyzes vast genomic datasets to identify genetic markers linked to psychiatric conditions. AI-driven models integrating genomic, clinical, and demographic data demonstrated high accuracy in predicting treatment outcomes for major depressive disorder and bipolar disorder. This study also examines the pressing challenges and provides strategic directions for integrating AI and ML in genomic psychiatry, highlighting the importance of ethical considerations and the need for personalized treatment. Effective implementation of AI-driven clinical decision support systems within electronic health records is crucial for translating PGx into routine psychiatric care. Future research should focus on developing enhanced AI-driven predictive models, privacy-preserving data exchange, and robust informatics systems to optimize patient outcomes and advance precision medicine in psychiatry.
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  • 文章类型: Journal Article
    合成数据生成已成为克服数据稀缺和隐私问题带来的挑战的有前途的解决方案,还有,以解决在具有足够样本量和统计能力的无偏数据上训练人工智能(AI)算法的需求。考虑到医疗数据的多样性,我们的评论探讨了合成数据方法在医疗保健中的应用和功效。为此,我们系统地搜索了PubMed和Scopus数据库,重点是表格,成像,影像组学,时间序列,和组学数据。还探索了涉及多模态合成数据生成的研究。在每项研究中确定了用于合成数据生成过程的方法类型,并将其分类为统计学,概率,机器学习,和深度学习。强调了用于实现每种方法的编程语言。我们的评估显示,大多数研究利用合成数据生成器:(i)减少罕见疾病和病症的临床试验所需的成本和时间,(Ii)增强AI模型在个性化医疗中的预测能力,(iii)确保在不同的患者人群中提供公平的治疗建议,(iv)使研究人员能够获得高质量的,代表性的多模态数据集,而不暴露敏感的患者信息,在其他人中。我们强调了在72.6%的纳入研究中广泛使用基于深度学习的合成数据生成器。75.3%的生成器是用Python实现的。最终提供了完整的开源存储库文档,以加速该领域的研究。
    Synthetic data generation has emerged as a promising solution to overcome the challenges which are posed by data scarcity and privacy concerns, as well as, to address the need for training artificial intelligence (AI) algorithms on unbiased data with sufficient sample size and statistical power. Our review explores the application and efficacy of synthetic data methods in healthcare considering the diversity of medical data. To this end, we systematically searched the PubMed and Scopus databases with a great focus on tabular, imaging, radiomics, time-series, and omics data. Studies involving multi-modal synthetic data generation were also explored. The type of method used for the synthetic data generation process was identified in each study and was categorized into statistical, probabilistic, machine learning, and deep learning. Emphasis was given to the programming languages used for the implementation of each method. Our evaluation revealed that the majority of the studies utilize synthetic data generators to: (i) reduce the cost and time required for clinical trials for rare diseases and conditions, (ii) enhance the predictive power of AI models in personalized medicine, (iii) ensure the delivery of fair treatment recommendations across diverse patient populations, and (iv) enable researchers to access high-quality, representative multimodal datasets without exposing sensitive patient information, among others. We underline the wide use of deep learning based synthetic data generators in 72.6 % of the included studies, with 75.3 % of the generators being implemented in Python. A thorough documentation of open-source repositories is finally provided to accelerate research in the field.
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