data privacy

数据隐私
  • 文章类型: Journal Article
    背景:医学知识图谱提供了可解释的决策支持,帮助临床医生提供及时的诊断和治疗建议。然而,在现实世界的临床实践中,患者前往不同的医院寻求各种医疗服务,导致不同医院的患者数据分散。由于数据安全问题,数据碎片化限制了知识图的应用,因为单医院数据无法为生成精确的决策支持和全面的解释提供完整的证据。研究知识图谱系统多中心集成的新方法,信息敏感的医疗环境,使用零散的患者记录进行决策支持,同时保持数据隐私和安全性。
    目的:本研究旨在提出一种面向电子健康记录(EHR)的知识图谱系统,用于与多中心零散的患者医疗数据进行协作推理,同时保护数据隐私。
    方法:该研究引入了EHR知识图谱框架和新的协作推理过程,用于利用多中心碎片信息。该系统部署在每个医院中,并使用统一的语义结构和观察医疗结果伙伴关系(OMOP)词汇来标准化本地EHR数据集。该系统将本地EHR数据转换为语义格式并执行语义推理以生成中间推理结果。生成的中间发现使用hypernym概念来分离原始医疗数据。中间发现和哈希加密的患者身份通过区块链网络进行同步。多中心中间发现进行了最终推理和临床决策支持,而无需收集原始EHR数据。
    结果:通过一项应用研究对该系统进行了评估,该研究涉及利用多中心片段化的EHR数据来提醒非肾脏病临床医生注意被忽略的慢性肾脏病(CKD)患者。该研究涵盖了3家医院的非肾病科1185名患者。患者至少访问了两家医院。其中,通过使用多中心EHR数据进行协作推理,确定124例患者符合CKD诊断标准,而单独来自个别医院的数据不能促进这些患者CKD的识别.临床医生的评估表明,78/91(86%)患者为CKD阳性。
    结论:所提出的系统能够有效地利用多中心片段化的EHR数据进行临床应用。应用研究显示了该系统具有迅速和全面的决策支持的临床优势。
    BACKGROUND: The medical knowledge graph provides explainable decision support, helping clinicians with prompt diagnosis and treatment suggestions. However, in real-world clinical practice, patients visit different hospitals seeking various medical services, resulting in fragmented patient data across hospitals. With data security issues, data fragmentation limits the application of knowledge graphs because single-hospital data cannot provide complete evidence for generating precise decision support and comprehensive explanations. It is important to study new methods for knowledge graph systems to integrate into multicenter, information-sensitive medical environments, using fragmented patient records for decision support while maintaining data privacy and security.
    OBJECTIVE: This study aims to propose an electronic health record (EHR)-oriented knowledge graph system for collaborative reasoning with multicenter fragmented patient medical data, all the while preserving data privacy.
    METHODS: The study introduced an EHR knowledge graph framework and a novel collaborative reasoning process for utilizing multicenter fragmented information. The system was deployed in each hospital and used a unified semantic structure and Observational Medical Outcomes Partnership (OMOP) vocabulary to standardize the local EHR data set. The system transforms local EHR data into semantic formats and performs semantic reasoning to generate intermediate reasoning findings. The generated intermediate findings used hypernym concepts to isolate original medical data. The intermediate findings and hash-encrypted patient identities were synchronized through a blockchain network. The multicenter intermediate findings were collaborated for final reasoning and clinical decision support without gathering original EHR data.
    RESULTS: The system underwent evaluation through an application study involving the utilization of multicenter fragmented EHR data to alert non-nephrology clinicians about overlooked patients with chronic kidney disease (CKD). The study covered 1185 patients in nonnephrology departments from 3 hospitals. The patients visited at least two of the hospitals. Of these, 124 patients were identified as meeting CKD diagnosis criteria through collaborative reasoning using multicenter EHR data, whereas the data from individual hospitals alone could not facilitate the identification of CKD in these patients. The assessment by clinicians indicated that 78/91 (86%) patients were CKD positive.
    CONCLUSIONS: The proposed system was able to effectively utilize multicenter fragmented EHR data for clinical application. The application study showed the clinical benefits of the system with prompt and comprehensive decision support.
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  • 文章类型: Journal Article
    背景:可穿戴设备有可能通过早期发现和监测慢性疾病来改变医疗保健。这项研究旨在评估可穿戴设备的接受度,用法,以及不使用的原因。方法:在德国使用匿名问卷收集有关可穿戴拥有权的数据,使用行为,接受健康监测,和分享数据的意愿。结果:在643名受访者中,550名参与者提供了可穿戴接受数据。平均年龄为36.6岁,其中51.3%为女性,39.6%居住在农村地区。总的来说,33.8%的人报告说穿着可穿戴设备,主要是智能手表或健身腕带。男性(63.3%)和女性(57.8%)表示愿意佩戴传感器进行健康监测,61.5%的人愿意与医疗保健提供商共享数据。关注的问题包括数据安全,隐私,和感知的缺乏需要。结论:该研究强调了可穿戴设备的接受度和潜力,特别是健康监测和与医疗保健提供者的数据共享。解决数据安全和隐私问题可以加强创新可穿戴设备的采用,比如植入物,早期发现和监测慢性病。
    Background: Wearables have the potential to transform healthcare by enabling early detection and monitoring of chronic diseases. This study aimed to assess wearables\' acceptance, usage, and reasons for non-use. Methods: Anonymous questionnaires were used to collect data in Germany on wearable ownership, usage behaviour, acceptance of health monitoring, and willingness to share data. Results: Out of 643 respondents, 550 participants provided wearable acceptance data. The average age was 36.6 years, with 51.3% female and 39.6% residing in rural areas. Overall, 33.8% reported wearing a wearable, primarily smartwatches or fitness wristbands. Men (63.3%) and women (57.8%) expressed willingness to wear a sensor for health monitoring, and 61.5% were open to sharing data with healthcare providers. Concerns included data security, privacy, and perceived lack of need. Conclusion: The study highlights the acceptance and potential of wearables, particularly for health monitoring and data sharing with healthcare providers. Addressing data security and privacy concerns could enhance the adoption of innovative wearables, such as implants, for early detection and monitoring of chronic diseases.
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  • 文章类型: Journal Article
    背景:关于用户对隐私问题的意识以及对移动健康(mHealth)应用程序的接受度的影响,存在数据匮乏,尤其是在沙特的背景下。这些信息与满足沙特阿拉伯王国(KSA)用户的需求有关。
    目的:本文提出了一项混合方法研究的研究协议,以评估患者和利益相关者对隐私的看法,安全,以及通过KSA中的mHealth应用程序收集的数据的机密性,以及影响采用mHealth应用程序的因素。
    方法:将使用混合方法研究设计。在定量阶段,mHealth应用程序的患者和最终用户将从沙特阿拉伯各省随机招募,其中mHealth用户人数众多。研究工具将根据新出现的主题和利益攸关方访谈的结果,应用程序开发人员,卫生保健专业人员,和mHealth应用程序的用户(n=25)。调查将重点关注(1)如何提高患者的数据安全意识,隐私,和保密性;(2)在数据安全方面对当前mHealth应用程序的反馈,隐私,和保密性;以及(3)可能提高数据安全性的功能,隐私,和mHealth应用程序的保密性。同时,问卷的具体部分将侧重于患者的意识,隐私问题,保密问题,安全问题,感知有用性,感知到的易用性,和行为意图。定性数据将使用NVivo版本12进行主题分析。描述性统计,回归分析,结构方程建模将使用SPSS和偏最小二乘结构方程建模进行。
    结果:这项研究的伦理批准已从生物医学和科学研究伦理委员会获得,华威大学,以及KSA卫生部的医学研究和伦理委员会。定性阶段正在进行中,15名参与者接受了采访。其余10名参与者的面试将于2023年11月25日完成。初步专题分析仍在进行中。同时,定量阶段将于2023年12月10日开始,150名参与者提供签署和知情同意书参与研究.
    结论:混合方法研究将阐明患者对隐私的认识和关注的前提,安全,以及通过KSA中的mHealth应用程序收集的数据的机密性。此外,有关利益相关者和卫生保健专业人员对上述问题的观点的相关调查结果将被收集。结果将有助于政策制定者制定战略,以改善沙特用户/患者对mHealth应用程序的采用,并解决所提出的问题,从而从这些先进的医疗保健模式中受益匪浅。
    DERR1-10.2196/54933。
    BACKGROUND: There is data paucity regarding users\' awareness of privacy concerns and the resulting impact on the acceptance of mobile health (mHealth) apps, especially in the Saudi context. Such information is pertinent in addressing users\' needs in the Kingdom of Saudi Arabia (KSA).
    OBJECTIVE: This article presents a study protocol for a mixed method study to assess the perspectives of patients and stakeholders regarding the privacy, security, and confidentiality of data collected via mHealth apps in the KSA and the factors affecting the adoption of mHealth apps.
    METHODS: A mixed method study design will be used. In the quantitative phase, patients and end users of mHealth apps will be randomly recruited from various provinces in Saudi Arabia with a high population of mHealth users. The research instrument will be developed based on the emerging themes and findings from the interview conducted among stakeholders, app developers, health care professionals, and users of mHealth apps (n=25). The survey will focus on (1) how to improve patients\' awareness of data security, privacy, and confidentiality; (2) feedback on the current mHealth apps in terms of data security, privacy, and confidentiality; and (3) the features that might improve data security, privacy, and confidentiality of mHealth apps. Meanwhile, specific sections of the questionnaire will focus on patients\' awareness, privacy concerns, confidentiality concerns, security concerns, perceived usefulness, perceived ease of use, and behavioral intention. Qualitative data will be analyzed thematically using NVivo version 12. Descriptive statistics, regression analysis, and structural equation modeling will be performed using SPSS and partial least squares structural equation modeling.
    RESULTS: The ethical approval for this research has been obtained from the Biomedical and Scientific Research Ethics Committee, University of Warwick, and the Medical Research and Ethics Committee Ministry of Health in the KSA. The qualitative phase is ongoing and 15 participants have been interviewed. The interviews for the remaining 10 participants will be completed by November 25, 2023. Preliminary thematic analysis is still ongoing. Meanwhile, the quantitative phase will commence by December 10, 2023, with 150 participants providing signed and informed consent to participate in the study.
    CONCLUSIONS: The mixed methods study will elucidate the antecedents of patients\' awareness and concerns regarding the privacy, security, and confidentiality of data collected via mHealth apps in the KSA. Furthermore, pertinent findings on the perspectives of stakeholders and health care professionals toward the aforementioned issues will be gleaned. The results will assist policy makers in developing strategies to improve Saudi users\'/patients\' adoption of mHealth apps and addressing the concerns raised to benefit significantly from these advanced health care modalities.
    UNASSIGNED: DERR1-10.2196/54933.
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  • 文章类型: Journal Article
    在医学研究项目和数据共享计划中,假名化已成为安全管理患者和研究参与者身份的最佳实践。这种方法的优点是不需要直接识别数据来支持各种研究过程,同时仍然允许高级处理活动。例如数据链接。通常,假名化和相关功能捆绑在称为可信第三方(TTP)的特定技术和组织单元中。然而,假名化会大大增加数据管理和研究工作流程的复杂性,需要足够的工具支持。TTP的常见任务包括支持患者和样本身份的安全注册和假名化以及管理同意。
    尽管存在挑战,关于在大型大学医院实施TTP的成功架构和功能工具的报道很少。本文的目的是通过描述在Charité-UniversityätsmedizinBerlin建立的TTP的一部分开发和部署的软件架构和工具集来填补这一研究空白。
    TTP的基础架构旨在提供模块化结构,同时保持较低的维护要求。基本功能是通过免费的MOSAIC工具实现的。然而,支持通用研究过程需要实施跨越不同基本服务的工作流程,比如病人登记,随后是化名,并通过收集同意书结束。为了实现这一点,开发了集成层,以提供统一的代表性状态传输(REST)应用程序编程接口(API),作为更复杂工作流的基础。基于这个API,还实现了统一的图形用户界面,提供TTP支持的信息对象和工作流的集成视图。该API是使用Java和SpringBoot实现的,而图形用户界面是在PHP和Laravel中实现的。两种服务都使用共享的Keycloak实例作为角色和权限的统一管理系统。
    到2022年底,自2019年12月推出以来,TTP已经支持了10多个研究项目。在这些项目中,存储了3000多个身份,产生了超过30,000个化名,并提交了1500多份同意书。总的来说,超过150人经常使用软件平台。通过实现集成层和统一的用户界面,以及全面的角色和权限管理,操作TTP的工作量可以大大减少,作为支持的研究项目的人员可以独立使用许多功能。
    描述了架构和组件,我们创造了一个用户友好和合规的环境来支持研究项目。我们相信,对我们TTP的设计和实施的见解可以帮助其他机构高效地建立相应的结构。
    UNASSIGNED: Pseudonymization has become a best practice to securely manage the identities of patients and study participants in medical research projects and data sharing initiatives. This method offers the advantage of not requiring the direct identification of data to support various research processes while still allowing for advanced processing activities, such as data linkage. Often, pseudonymization and related functionalities are bundled in specific technical and organization units known as trusted third parties (TTPs). However, pseudonymization can significantly increase the complexity of data management and research workflows, necessitating adequate tool support. Common tasks of TTPs include supporting the secure registration and pseudonymization of patient and sample identities as well as managing consent.
    UNASSIGNED: Despite the challenges involved, little has been published about successful architectures and functional tools for implementing TTPs in large university hospitals. The aim of this paper is to fill this research gap by describing the software architecture and tool set developed and deployed as part of a TTP established at Charité - Universitätsmedizin Berlin.
    UNASSIGNED: The infrastructure for the TTP was designed to provide a modular structure while keeping maintenance requirements low. Basic functionalities were realized with the free MOSAIC tools. However, supporting common study processes requires implementing workflows that span different basic services, such as patient registration, followed by pseudonym generation and concluded by consent collection. To achieve this, an integration layer was developed to provide a unified Representational state transfer (REST) application programming interface (API) as a basis for more complex workflows. Based on this API, a unified graphical user interface was also implemented, providing an integrated view of information objects and workflows supported by the TTP. The API was implemented using Java and Spring Boot, while the graphical user interface was implemented in PHP and Laravel. Both services use a shared Keycloak instance as a unified management system for roles and rights.
    UNASSIGNED: By the end of 2022, the TTP has already supported more than 10 research projects since its launch in December 2019. Within these projects, more than 3000 identities were stored, more than 30,000 pseudonyms were generated, and more than 1500 consent forms were submitted. In total, more than 150 people regularly work with the software platform. By implementing the integration layer and the unified user interface, together with comprehensive roles and rights management, the effort for operating the TTP could be significantly reduced, as personnel of the supported research projects can use many functionalities independently.
    UNASSIGNED: With the architecture and components described, we created a user-friendly and compliant environment for supporting research projects. We believe that the insights into the design and implementation of our TTP can help other institutions to efficiently and effectively set up corresponding structures.
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  • 文章类型: Journal Article
    在代谢和内分泌疾病的管理中使用ChatGPT和人工智能(AI)既存在重大机遇,也存在明显风险。
    通过探索内分泌学家和糖尿病学家的观点,调查与ChatGPT在管理糖尿病和代谢性疾病中的应用相关的益处和风险。
    这项研究采用了定性研究方法。开发了半结构化的深度访谈指南。纳入25名内分泌学家和糖尿病学家的便利样本并进行了采访。所有采访都是录音和逐字转录的;然后,主题分析用于确定数据中的主题。
    主题分析的结果得出了19个代码和9个主要主题,涉及实施AI和ChatGPT在管理糖尿病和代谢疾病方面的益处。此外,在糖尿病和代谢性疾病管理中实施AI和ChatGPT的风险被分为7个主题和14个代码.提高诊断精度的好处,量身定制的治疗,和有效的资源利用有可能改善患者的结果。同时,识别潜在的挑战,例如数据安全问题和对可以解释的人工智能的需求,使利益相关者能够主动解决这些问题。
    监管框架必须不断发展,以跟上AI在医疗保健中的快速采用。持续关注道德考虑,包括获得患者的同意,保护数据隐私,确保问责制,促进公平,仍然至关重要。尽管它对人类医疗保健方面的潜在影响,人工智能将继续成为以患者为中心的护理的一个组成部分。在人工智能辅助决策和人类专业知识之间取得平衡对于维护信任和提供全面的患者护理至关重要。
    监管框架必须不断发展,以跟上AI在医疗保健中的快速采用。持续关注道德考虑,包括获得患者的同意,保护数据隐私,确保问责制,促进公平,仍然至关重要。尽管它对人类医疗保健方面的潜在影响,人工智能将继续成为以患者为中心的护理的一个组成部分。在代谢和内分泌疾病的管理中使用ChatGPT既存在重要的机会,也存在明显的风险。提高诊断精度的好处,量身定制的治疗,和有效的资源利用有可能改善患者的结果。同时,识别潜在的挑战,例如数据安全问题和对可以解释的人工智能的需求,使利益相关者能够主动解决这些问题。监管框架必须不断发展,以跟上人工智能在医疗保健中的快速采用。持续关注道德考虑,包括获得患者的同意,保护数据隐私,确保问责制,促进公平,仍然至关重要。尽管它对人类医疗保健方面的潜在影响,人工智能将继续成为以患者为中心的护理的一个组成部分。在人工智能辅助决策和人类专业知识之间取得平衡对于维护信任和提供全面的患者护理至关重要。
    UNASSIGNED: The use of ChatGPT and artificial intelligence (AI) in the management of metabolic and endocrine disorders presents both significant opportunities and notable risks.
    UNASSIGNED: To investigate the benefits and risks associated with the application of ChatGPT in managing diabetes and metabolic illnesses by exploring the perspectives of endocrinologists and diabetologists.
    UNASSIGNED: The study employed a qualitative research approach. A semi-structured in-depth interview guide was developed. A convenience sample of 25 endocrinologists and diabetologists was enrolled and interviewed. All interviews were audiotaped and verbatim transcribed; then, thematic analysis was used to determine the themes in the data.
    UNASSIGNED: The findings of the thematic analysis resulted in 19 codes and 9 major themes regarding the benefits of implementing AI and ChatGPT in managing diabetes and metabolic illnesses. Moreover, the extracted risks of implementing AI and ChatGPT in managing diabetes and metabolic illnesses were categorized into 7 themes and 14 codes. The benefits of heightened diagnostic precision, tailored treatment, and efficient resource utilization have potential to improve patient results. Concurrently, the identification of potential challenges, such as data security concerns and the need for AI that can be explained, enables stakeholders to proactively tackle these issues.
    UNASSIGNED: Regulatory frameworks must evolve to keep pace with the rapid adoption of AI in healthcare. Sustained attention to ethical considerations, including obtaining patient consent, safeguarding data privacy, ensuring accountability, and promoting fairness, remains critical. Despite its potential impact on the human aspect of healthcare, AI will remain an integral component of patient-centered care. Striking a balance between AI-assisted decision-making and human expertise is essential to uphold trust and provide comprehensive patient care.
    Regulatory frameworks must evolve to keep pace with the rapid adoption of AI in healthcare. Sustained attention to ethical considerations, including obtaining patient consent, safeguarding data privacy, ensuring accountability, and promoting fairness, remains critical. Despite its potential impact on the human aspect of healthcare, AI will remain an integral component of patient-centered care. The use of ChatGPT in the management of metabolic and endocrine disorders presents both significant opportunities and notable risks. The benefits of heightened diagnostic precision, tailored treatment, and efficient resource utilization have potential to improve patient results. Concurrently, the identification of potential challenges, such as data security concerns and the need for AI that can be explained, enables stakeholders to proactively tackle these issues. Regulatory frameworks must evolve to keep pace with the rapid adoption of AI in healthcare. Sustained attention to ethical considerations, including obtaining patient consent, safeguarding data privacy, ensuring accountability, and promoting fairness, remains critical. Despite its potential impact on the human aspect of healthcare, AI will remain an integral component of patient-centered care. Striking a balance between AI-assisted decision-making and human expertise is essential to uphold trust and provide comprehensive patient care.
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  • 文章类型: Journal Article
    背景:基于网络的调查增加了参与研究的机会,并改善了接触不同人群的机会。然而,基于网络的调查容易受到数据质量威胁,包括来自自动机器人的欺诈性条目和重复提交。广泛使用的专有工具来识别欺诈行为,对所使用的方法几乎没有透明度,有效性,或结果数据集的代表性。健壮,可重复,并且需要准确检测欺诈性响应的特定环境方法,以确保完整性并最大限度地发挥基于网络的调查研究的价值。
    目的:本研究旨在描述在一项关于COVID-19态度的大型网络调查中实施的多层欺诈检测系统,信仰,和行为;检查此欺诈检测系统与专有欺诈检测系统之间的协议;并比较2种欺诈检测方法中每种方法的结果研究样本。
    方法:PhillyCEAL共同调查是一项基于网络的横断面调查,该调查远程登记了13岁及以上的居民,以评估COVID-19大流行如何影响个人,邻里,和费城的社区,宾夕法尼亚。描述并比较了两种欺诈检测方法:(1)研究团队开发的多层欺诈检测策略,该策略结合了响应数据的自动验证和研究人员对研究条目的实时验证;(2)Qualtrics(Qualtrics)调查平台使用的专有欺诈检测系统。为完整样本和通过2种不同的欺诈检测方法分类为有效的响应计算描述性统计数据,并创建分类表以评估方法之间的一致性。评估了欺诈检测方法对按种族或族裔群体分布的疫苗信心的影响。
    结果:完成的7950项调查,我们的多层欺诈检测系统确定3228例(40.60%)有效,而Qualtrics欺诈检测系统确定4389(55.21%)例有效。这两种方法在分类中仅显示出“公平”或“最小”的一致性(κ=0.25;95%CI0.23-0.27)。欺诈检测方法的选择影响了按种族或族裔群体划分的疫苗信心分布。
    结论:欺诈检测方法的选择会影响研究的样本组成。这项研究的结果,虽然没有定论,建议采取一种多层的欺诈检测方法,包括保守地使用自动欺诈检测,并根据研究的特定背景及其参与者对条目进行人工审查,这可能是未来调查研究的必要条件。
    BACKGROUND: Web-based surveys increase access to study participation and improve opportunities to reach diverse populations. However, web-based surveys are vulnerable to data quality threats, including fraudulent entries from automated bots and duplicative submissions. Widely used proprietary tools to identify fraud offer little transparency about the methods used, effectiveness, or representativeness of resulting data sets. Robust, reproducible, and context-specific methods of accurately detecting fraudulent responses are needed to ensure integrity and maximize the value of web-based survey research.
    OBJECTIVE: This study aims to describe a multilayered fraud detection system implemented in a large web-based survey about COVID-19 attitudes, beliefs, and behaviors; examine the agreement between this fraud detection system and a proprietary fraud detection system; and compare the resulting study samples from each of the 2 fraud detection methods.
    METHODS: The PhillyCEAL Common Survey is a cross-sectional web-based survey that remotely enrolled residents ages 13 years and older to assess how the COVID-19 pandemic impacted individuals, neighborhoods, and communities in Philadelphia, Pennsylvania. Two fraud detection methods are described and compared: (1) a multilayer fraud detection strategy developed by the research team that combined automated validation of response data and real-time verification of study entries by study personnel and (2) the proprietary fraud detection system used by the Qualtrics (Qualtrics) survey platform. Descriptive statistics were computed for the full sample and for responses classified as valid by 2 different fraud detection methods, and classification tables were created to assess agreement between the methods. The impact of fraud detection methods on the distribution of vaccine confidence by racial or ethnic group was assessed.
    RESULTS: Of 7950 completed surveys, our multilayer fraud detection system identified 3228 (40.60%) cases as valid, while the Qualtrics fraud detection system identified 4389 (55.21%) cases as valid. The 2 methods showed only \"fair\" or \"minimal\" agreement in their classifications (κ=0.25; 95% CI 0.23-0.27). The choice of fraud detection method impacted the distribution of vaccine confidence by racial or ethnic group.
    CONCLUSIONS: The selection of a fraud detection method can affect the study\'s sample composition. The findings of this study, while not conclusive, suggest that a multilayered approach to fraud detection that includes conservative use of automated fraud detection and integration of human review of entries tailored to the study\'s specific context and its participants may be warranted for future survey research.
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  • 文章类型: Journal Article
    背景:急性中风护理需要通过跨多个组织的多个专业人员的协作来执行快速程序。云计算和电子病历(EMR)的广泛采用使医疗保健系统能够提高数据可用性并促进专业人员之间的共享。然而,设计一个安全和隐私保护的EMR基于云的应用程序是具有挑战性的,因为它必须根据治疗期间对数据的需求动态地控制对患者EMR的访问。
    目的:我们开发了一个基于云的安全EMR应用程序原型。该应用程序探讨了基于eHealth云的框架提供的安全功能,该框架由高级安全云加密平台为医疗保健Horizon2020中的国际编排解决方案创建。这项研究旨在收集印象,挑战,以及在荷兰紧急治疗期间应用于急性护理团队之间安全数据共享的用例时对原型的改进。
    方法:我们对医疗专业人员进行了14次半结构化访谈,在急性护理中扮演4个重要角色:紧急呼叫中心,救护车服务,急诊医院,和全科医生诊所。我们使用深度访谈来捕捉他们对应用程序的设计和功能及其在模拟急性护理事件中的使用的看法。我们使用访谈笔录的主题分析。招募参与者,直到收集的数据达到主题饱和。
    结果:参与者的看法和反馈被呈现为从访谈中确定的5个主题:当前的挑战(主题1),共享EMR数据的质量(主题2),EMR数据的完整性和可审计性(主题3),应用程序的实用性和功能(主题4),以及对技术的信任和接受(主题5)。结果加强了急性中风护理期间患者数据共享的当前挑战。此外,从用户的角度来看,我们表达了在真实场景中采用高级安全云加密平台在医疗保健急性卒中护理应用中的国际编排解决方案所面临的挑战,并提供了改进建议技术可接受性的建议。
    结论:这项研究认可了一个系统,该系统可以有效地支持急性护理专业人员之间的数据共享,但不影响患者的安全和隐私.这项探索性研究确定了未来接受和采用拟议系统的几个重大障碍和改进机会。此外,研究结果强调,所需的数字转换应考虑集成已经存在的系统,而不是要求迁移到新的集中式系统。
    BACKGROUND: Acute stroke care demands fast procedures performed through the collaboration of multiple professionals across multiple organizations. Cloud computing and the wide adoption of electronic medical records (EMRs) enable health care systems to improve data availability and facilitate sharing among professionals. However, designing a secure and privacy-preserving EMR cloud-based application is challenging because it must dynamically control the access to the patient\'s EMR according to the needs for data during treatment.
    OBJECTIVE: We developed a prototype of a secure EMR cloud-based application. The application explores the security features offered by the eHealth cloud-based framework created by the Advanced Secure Cloud Encrypted Platform for Internationally Orchestrated Solutions in Health Care Horizon 2020 project. This study aimed to collect impressions, challenges, and improvements for the prototype when applied to the use case of secure data sharing among acute care teams during emergency treatment in the Netherlands.
    METHODS: We conducted 14 semistructured interviews with medical professionals with 4 prominent roles in acute care: emergency call centers, ambulance services, emergency hospitals, and general practitioner clinics. We used in-depth interviews to capture their perspectives about the application\'s design and functions and its use in a simulated acute care event. We used thematic analysis of interview transcripts. Participants were recruited until the collected data reached thematic saturation.
    RESULTS: The participants\' perceptions and feedback are presented as 5 themes identified from the interviews: current challenges (theme 1), quality of the shared EMR data (theme 2), integrity and auditability of the EMR data (theme 3), usefulness and functionality of the application (theme 4), and trust and acceptance of the technology (theme 5). The results reinforced the current challenges in patient data sharing during acute stroke care. Moreover, from the user point of view, we expressed the challenges of adopting the Advanced Secure Cloud Encrypted Platform for Internationally Orchestrated Solutions in Health Care Acute Stroke Care application in a real scenario and provided suggestions for improving the proposed technology\'s acceptability.
    CONCLUSIONS: This study has endorsed a system that supports data sharing among acute care professionals with efficiency, but without compromising the security and privacy of the patient. This explorative study identified several significant barriers to and improvement opportunities for the future acceptance and adoption of the proposed system. Moreover, the study results highlight that the desired digital transformation should consider integrating the already existing systems instead of requesting migration to a new centralized system.
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  • 文章类型: Journal Article
    随着传感器的出现,越来越多的服务被开发,以便为客户提供关于他们的健康和他们的家电\'在家里的能源消耗的见解。要做到这一点,这些服务使用新的挖掘算法来创建新的推理通道。然而,收集的传感器数据可以被转移到推断客户不同意共享的个人数据。这种对未收集的数据的间接访问对应于涉及原始传感器数据(IASD)的推理攻击。面对这些新型攻击,现有的推理检测系统不适合这些推理通道和用户知识的表示要求。在本文中,我们提出了满足这些推理通道表示的RICE-M(基于原始传感器数据的推理信道模型)。基于RICE-M,我们提出了RICE-Sy一个能够检测IASD的可扩展系统,并以MHEALTH数据集为例评估了其性能。不出所料,由于管理的大量传感器数据和快速增长的用户知识,检测IASD被证明是二次的。为了克服这个缺点,我们首先提出了一组降低检测复杂度的概念优化。虽然变得线性,由于在线检测时间保持大于固定的可接受查询响应限制,我们提出了两种方法来估计RICE-Sy的潜力。第一个是基于分区策略,旨在对用户的知识进行分区。我们观察到,通过将用户获得的知识数量作为划分标准,RICE-Sy的中位检测时间减少了63%。第二种方法是H-RICE-SY,建立在RICE-Sy上的混合检测体系结构,该体系结构将查询时的检测限制为具有高恶意概率的用户。我们展示了在查询时处理所有恶意用户的限制,而不会影响查询应答时间。我们观察到,对于30%的用户被认为是恶意的,在线检测时间中位数保持在80ms的可接受时间以下,总共有120万个用户知识实体。根据观察到的增长率,我们估计,对于恶意用户发布的5%的用户知识,在可接受的时间内,可以在线处理最大约860万用户的信息。
    With the advent of sensors, more and more services are developed in order to provide customers with insights about their health and their appliances\' energy consumption at home. To do so, these services use new mining algorithms that create new inference channels. However, the collected sensor data can be diverted to infer personal data that customers do not consent to share. This indirect access to data that are not collected corresponds to inference attacks involving raw sensor data (IASD). Towards these new kinds of attacks, existing inference detection systems do not suit the representation requirements of these inference channels and of user knowledge. In this paper, we propose RICE-M (Raw sensor data based Inference ChannEl Model) that meets these inference channel representations. Based on RICE-M, we proposed RICE-Sy an extensible system able to detect IASDs, and evaluated its performance taking as a case study the MHEALTH dataset. As expected, detecting IASD is proven to be quadratic due to huge sensor data managed and a quickly growing amount of user knowledge. To overcome this drawback, we propose first a set of conceptual optimizations that reduces the detection complexity. Although becoming linear, as online detection time remains greater than a fixed acceptable query response limit, we propose two approaches to estimate the potential of RICE-Sy. The first one is based on partitioning strategies which aim at partitioning the knowledge of users. We observe that by considering the quantity of knowledge gained by a user as a partitioning criterion, the median detection time of RICE-Sy is reduced by 63%. The second approach is H-RICE-SY, a hybrid detection architecture built on RICE-Sy which limits the detection at query-time to users that have a high probability to be malicious. We show the limits of processing all malicious users at query-time, without impacting the query answer time. We observe that for a ratio of 30% users considered as malicious, the median online detection time stays under the acceptable time of 80 ms, for up to a total volume of 1.2 million user knowledge entities. Based on the observed growth rates, we have estimated that for 5% of user knowledge issued by malicious users, a maximum volume of approximately 8.6 million user\'s information can be processed online in an acceptable time.
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  • 文章类型: Meta-Analysis
    背景:COVID-19数据已作为临床护理和公共卫生提供的副产品在英国各地产生,以及许多定制和重新利用的研究努力。对这些数据的分析支持了英国对这一流行病的反应,以及知情的公共卫生政策和临床指南。然而,这些数据由不同的组织持有,这种支离破碎的景观给公共卫生机构和研究人员带来了挑战,因为他们努力寻找相关数据来访问和询问他们需要的数据,以便及时为大流行应对措施提供信息。
    目标:我们的目标是将英国COVID-19诊断数据集转变为可查找的,可访问,可互操作,和可重复使用(FAIR)。
    方法:快速构建了一个联合基础设施模型(COVID-策划和开放的分析和研究平台[CO-CONNECT]),以实现将健康数据合作伙伴的假名数据自动映射到观察医疗结果合作伙伴共同数据模型,而无需任何数据离开数据控制器的安全环境,并支持联合队列发现查询和荟萃分析。
    结果:共有来自19个组织的56个数据集连接到联合网络。数据包括研究队列和通过与纵向医疗保健记录和人口统计相关的常规医疗保健提供收集的COVID-19数据。基础设施是活的,支持对整个英国的数据进行聚合级查询。
    结论:CO-CONNECT是由一个多学科团队开发的。它支持跨数据源的快速COVID-19数据发现和即时荟萃分析,它正在研究简化的数据提取,以便在可信的研究环境中进行研究和公共卫生分析。CO-CONNECT有可能使英国的健康数据更加相互联系,并能够更好地回答国家一级的研究问题,同时保持患者的机密性和地方治理程序。
    COVID-19 data have been generated across the United Kingdom as a by-product of clinical care and public health provision, as well as numerous bespoke and repurposed research endeavors. Analysis of these data has underpinned the United Kingdom\'s response to the pandemic, and informed public health policies and clinical guidelines. However, these data are held by different organizations, and this fragmented landscape has presented challenges for public health agencies and researchers as they struggle to find relevant data to access and interrogate the data they need to inform the pandemic response at pace.
    We aimed to transform UK COVID-19 diagnostic data sets to be findable, accessible, interoperable, and reusable (FAIR).
    A federated infrastructure model (COVID - Curated and Open Analysis and Research Platform [CO-CONNECT]) was rapidly built to enable the automated and reproducible mapping of health data partners\' pseudonymized data to the Observational Medical Outcomes Partnership Common Data Model without the need for any data to leave the data controllers\' secure environments, and to support federated cohort discovery queries and meta-analysis.
    A total of 56 data sets from 19 organizations are being connected to the federated network. The data include research cohorts and COVID-19 data collected through routine health care provision linked to longitudinal health care records and demographics. The infrastructure is live, supporting aggregate-level querying of data across the United Kingdom.
    CO-CONNECT was developed by a multidisciplinary team. It enables rapid COVID-19 data discovery and instantaneous meta-analysis across data sources, and it is researching streamlined data extraction for use in a Trusted Research Environment for research and public health analysis. CO-CONNECT has the potential to make UK health data more interconnected and better able to answer national-level research questions while maintaining patient confidentiality and local governance procedures.
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  • 文章类型: Journal Article
    背景:合成数据生成(SDG)方法的开发人员和用户的常规任务是评估和比较这些方法的效用。已提出并使用多个效用度量来评估合成数据。然而,它们尚未经过一般验证或用于比较SDG方法。
    目的:本研究评估了通用效用指标根据特定分析工作负载的性能对SDG方法进行排名的能力。感兴趣的工作量是将合成数据用于逻辑回归预测模型,这是健康研究中非常常见的工作量。
    方法:我们对30个不同的健康数据集和3个不同的SDG方法(贝叶斯网络,生成对抗网络,和顺序树合成)。这些指标是通过对来自相同生成模型的20个合成数据集进行平均来计算的。然后测试指标根据预测性能对SDG方法进行排名的能力。预测性能定义为合成数据逻辑回归预测模型与实际数据模型上的接收器工作特征曲线下面积与精确召回曲线下面积之间的差异。
    结果:能够对SDG方法进行排名的最佳效用度量是基于真实和合成联合分布的高斯结合表示的多变量Hellinger距离。
    结论:本研究验证了生成模型效用度量,多变量Hellinger距离,可用于在同一数据集上对竞争的SDG方法进行可靠排名。Hellinger距离度量可用于评估和比较替代的SDG方法。
    BACKGROUND: A regular task by developers and users of synthetic data generation (SDG) methods is to evaluate and compare the utility of these methods. Multiple utility metrics have been proposed and used to evaluate synthetic data. However, they have not been validated in general or for comparing SDG methods.
    OBJECTIVE: This study evaluates the ability of common utility metrics to rank SDG methods according to performance on a specific analytic workload. The workload of interest is the use of synthetic data for logistic regression prediction models, which is a very frequent workload in health research.
    METHODS: We evaluated 6 utility metrics on 30 different health data sets and 3 different SDG methods (a Bayesian network, a Generative Adversarial Network, and sequential tree synthesis). These metrics were computed by averaging across 20 synthetic data sets from the same generative model. The metrics were then tested on their ability to rank the SDG methods based on prediction performance. Prediction performance was defined as the difference between each of the area under the receiver operating characteristic curve and area under the precision-recall curve values on synthetic data logistic regression prediction models versus real data models.
    RESULTS: The utility metric best able to rank SDG methods was the multivariate Hellinger distance based on a Gaussian copula representation of real and synthetic joint distributions.
    CONCLUSIONS: This study has validated a generative model utility metric, the multivariate Hellinger distance, which can be used to reliably rank competing SDG methods on the same data set. The Hellinger distance metric can be used to evaluate and compare alternate SDG methods.
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