Data

Data
  • 文章类型: Journal Article
    了解灾害对健康的影响对于有效备灾至关重要,回应,recovery,和缓解。然而,灾害数据的有限可用性以及难以识别和利用与灾害研究和管理相关的特定灾害和健康数据源的负面影响。为了响应灾难研究人员的众多要求,应急管理人员,和运营响应组织,在灾害和健康的交汇处,对73个不同的数据源进行了汇编和分类。这些数据来源通常覆盖整个美国,解决灾害和健康问题,并且可以在很少或没有成本的情况下提供给研究人员。对数据源进行了描述和表征,以支持改进的研究并指导基于证据的决策。提出了当前的差距和潜在的解决方案,以改善灾难数据收集,利用率,和传播。
    Understanding the health effects of disasters is critical for effective preparedness, response, recovery, and mitigation. However, research is negatively impacted by both the limited availability of disaster data and the difficulty of identifying and utilizing disaster-specific and health data sources relevant to disaster research and management. In response to numerous requests from disaster researchers, emergency managers, and operational response organizations, 73 distinct data sources at the intersection of disasters and health were compiled and categorized. These data sources generally cover the entire United States, address both disasters and health, and are available to researchers at little or no cost. Data sources are described and characterized to support improved research and guide evidence-based decision making. Current gaps and potential solutions are presented to improve disaster data collection, utilization, and dissemination.
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  • 文章类型: Journal Article
    目的:全球导航卫星系统设备衍生的度量通常由离散区域表示,其强度通常通过将活动持续时间的体积标准化为每分钟来测量。这种方法对持续时间测量的不精确敏感,并且可能导致高度可变的结果-将数据从区域转换为梯度可以克服这个问题。这项研究的目的是批判性地评估这种方法来衡量团队运动活动的需求。
    方法:数据来自苏格兰英超足球俱乐部的129个一线队和73个学院比赛。计算了速度的梯度,加速度,和减速区,以及几个常用指标的每分钟值。平均值和95%CI是为比赛水平计算的,以及一线队的位置小组。还计算了匹配水平的受试者内变异系数,position,和个人团体。
    结果:梯度方法在测量比赛水平和位置组时显示出与每分钟指标的一致性。变异系数为10.8%至26.9%,梯度显示出比大多数每分钟变量更低的变异性,从10.7%到84.5%不等。
    结论:梯度是描述团队运动强度的潜在有用方法,并且在区分比赛类型和位置组的能力方面与现有强度变量相比具有优势。提供证据表明梯度变量可用于监测团队运动中的比赛和训练强度。
    OBJECTIVE: Global navigation satellite system device-derived metrics are commonly represented by discrete zones with intensity often measured by standardizing volume to per-minute of activity duration. This approach is sensitive to imprecision in duration measurement and can lead to highly variable outcomes-transforming data from zones to a gradient may overcome this problem. The purpose of this study was to critically evaluate this approach for measuring team-sport activity demands.
    METHODS: Data were collected from 129 first-team and 73 academy matches from a Scottish Premiership football club. Gradients were calculated for velocity, acceleration, and deceleration zones, along with per-minute values for several commonly used metrics. Means and 95% CIs were calculated for playing level, as well as first-team positional groups. Within-subject coefficients of variation were also calculated for match level, position, and individual groups.
    RESULTS: The gradient approach showed consistency with per-minute metrics when measuring playing level and position groups. With coefficients of variation of 10.8% to 26.9%, the gradients demonstrated lower variability than most per-minute variables, which ranged from 10.7% to 84.5%.
    CONCLUSIONS: Gradients are a potentially useful way of describing intensity in team sports and compare favorably to existing intensity variables in their ability to distinguish between match types and position groups, providing evidence that gradient variables can be used to monitor match and training intensity in team sports.
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  • 文章类型: Journal Article
    胸外科医师协会和欧洲心脏手术风险评估系统(EuroSCORE)II风险评分是成人心脏手术后住院死亡率最常用的风险预测模型。然而,随着时间的推移,它们容易出现校准错误,并且在数据集上的泛化效果较差;因此,他们的使用仍然存在争议。尽管兴趣增加,随着时间的推移,在理解数据集漂移对机器学习(ML)性能的影响方面存在差距,这仍然是其在临床实践中更广泛使用的障碍.当ML系统由于其开发的数据与部署的数据之间的不匹配而表现不佳时,就会发生数据集漂移。
    在这项研究中,我们使用建立在英国大型心脏手术数据库上的模型分析了性能漂移的程度.目标是(1)对心脏手术风险ML模型随时间的性能漂移程度进行排序和评估,以及(2)调查数据集漂移和可变重要性漂移对性能漂移的任何潜在影响。
    我们进行了一项前瞻性的回顾性分析,常规收集2012年至2019年在英国接受心脏手术的成年患者的数据.我们在时间上将数据70:30分为训练和验证集以及保持集。开发并评估了五种新型ML死亡率预测模型,以及EuroSCOREII,对于可变重要性漂移之间和内部的关系,性能漂移,和实际数据集漂移。使用共识指标评估绩效。
    在研究期间,共有227,087名成年人接受了心脏手术,死亡率为2.76%(n=6258)。有强有力的证据表明,所有模型的总体性能均下降(P<0.0001)。极端梯度增强(临床有效性指标[CEM]0.728,95%CI0.728-0.729)和随机森林(CEM0.727,95%CI0.727-0.728)是总体表现最好的模型,时间上和非时间上。EuroSCOREII在所有比较中表现最差。从2017年10月到12月,从2018年6月到7月以及从2018年12月到2019年2月,变量重要性和数据集漂移的急剧变化反映了各个模型性能下降的影响。
    所有模型显示5个单独指标中至少有3个下降。CEM和可变重要性漂移检测证明了用于心脏手术风险预测的逻辑回归方法的局限性和数据集漂移的影响。未来的工作将需要确定ML模型之间的相互作用,以及集成模型是否可以改善其各自的性能优势。
    UNASSIGNED: The Society of Thoracic Surgeons and European System for Cardiac Operative Risk Evaluation (EuroSCORE) II risk scores are the most commonly used risk prediction models for in-hospital mortality after adult cardiac surgery. However, they are prone to miscalibration over time and poor generalization across data sets; thus, their use remains controversial. Despite increased interest, a gap in understanding the effect of data set drift on the performance of machine learning (ML) over time remains a barrier to its wider use in clinical practice. Data set drift occurs when an ML system underperforms because of a mismatch between the data it was developed from and the data on which it is deployed.
    UNASSIGNED: In this study, we analyzed the extent of performance drift using models built on a large UK cardiac surgery database. The objectives were to (1) rank and assess the extent of performance drift in cardiac surgery risk ML models over time and (2) investigate any potential influence of data set drift and variable importance drift on performance drift.
    UNASSIGNED: We conducted a retrospective analysis of prospectively, routinely gathered data on adult patients undergoing cardiac surgery in the United Kingdom between 2012 and 2019. We temporally split the data 70:30 into a training and validation set and a holdout set. Five novel ML mortality prediction models were developed and assessed, along with EuroSCORE II, for relationships between and within variable importance drift, performance drift, and actual data set drift. Performance was assessed using a consensus metric.
    UNASSIGNED: A total of 227,087 adults underwent cardiac surgery during the study period, with a mortality rate of 2.76% (n=6258). There was strong evidence of a decrease in overall performance across all models (P<.0001). Extreme gradient boosting (clinical effectiveness metric [CEM] 0.728, 95% CI 0.728-0.729) and random forest (CEM 0.727, 95% CI 0.727-0.728) were the overall best-performing models, both temporally and nontemporally. EuroSCORE II performed the worst across all comparisons. Sharp changes in variable importance and data set drift from October to December 2017, from June to July 2018, and from December 2018 to February 2019 mirrored the effects of performance decrease across models.
    UNASSIGNED: All models show a decrease in at least 3 of the 5 individual metrics. CEM and variable importance drift detection demonstrate the limitation of logistic regression methods used for cardiac surgery risk prediction and the effects of data set drift. Future work will be required to determine the interplay between ML models and whether ensemble models could improve on their respective performance advantages.
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  • 文章类型: Journal Article
    心血管护理中的数字和技术解决方案(DTS)通过集成先进的数据驱动方法,正在深刻地改变患者护理的格局。DTS有助于提高患者预后并简化临床工作流程,支持医疗保健提供者和患者的传统角色向更多参与和协作的护理过程的转变。本文提出了这方面的观点。采用DTS,包括移动健康应用程序和可穿戴设备,能够持续监测和管理患者的健康,促进心血管健康管理的显著改善。然而,这些技术的快速整合带来了各种挑战,例如强大的数据标准化,医疗保健专业人员数字素养的发展,解决隐私和安全问题。将DTS有效整合到护理实践中需要结构化的临床课程,使护士具备必要的技术技能和对道德考虑的深刻理解。理论框架应指导数字工具的系统实施和集成,确保全面考虑医疗保健数字化转型所涉及的复杂性。
    Digital and technological solutions (DTS) in cardiovascular nursing are profoundly transforming the landscape of patient care by integrating advanced data-driven approaches. DTS help to enhance patient outcomes and streamline clinical workflows, supporting the shift of the traditional roles of healthcare providers and patients towards more engaged and collaborative care processes. This article presents a perspective in this regard. The adoption of DTS, including mobile health applications and wearable devices, enables continuous monitoring and management of patient health, fostering significant improvements in cardiovascular health management. However, the rapid incorporation of such technologies presents various challenges, such as robust data standardization, the development of digital literacy among healthcare professionals, and addressing privacy and security concerns. Effective integration of DTS into nursing practice demands structured clinical curricula that equip nurses with essential technological skills and a deep understanding of ethical considerations. Theoretical frameworks should guide the systematic implementation and integration of digital tools, ensuring comprehensive consideration of the complexities involved in digital transformations in healthcare.
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  • 文章类型: Journal Article
    背景:慢性应激在德国人群中非常普遍。已知它对心理健康有不良影响,如倦怠和抑郁。慢性压力的已知长期影响是心血管疾病,糖尿病,和癌症。
    目的:本研究旨在基于德国成人健康访谈和检查调查的全国代表性数据,得出一个可解释的多类机器学习模型,用于预测慢性压力水平和预防慢性压力的因素。这是国家健康监测计划的一部分。
    方法:来自德国成人健康访谈和检查调查研究的数据集,包括人口统计学,临床,分析了5801名参与者的实验室数据.构建了一个多类极限梯度提升(XGBoost)模型,将参与者分为3类,包括低,中间,和高慢性压力水平。使用接收器工作特性曲线下的面积评估模型的性能,精度,召回,特异性,和F1得分。此外,使用Shapley加法扩张来解释预测XGBoost模型并确定保护免受慢性压力的因素。
    结果:多类XGBoost模型显示了宏观平均分数,接收器工作特性曲线下面积为81%,精度为63%,召回52%,特异性为78%,F1得分为54%。低水平慢性压力的最重要特征是男性,良好的整体健康,对生活空间的高度满意,强大的社会支持。
    结论:本研究为德国成年人的慢性应激提供了一个多类可解释的预测模型。可解释的人工智能技术Shapley加法扩张确定了慢性压力的相关保护因素,在制定减少慢性压力的干预措施时需要考虑这一点。
    BACKGROUND: Chronic stress is highly prevalent in the German population. It has known adverse effects on mental health, such as burnout and depression. Known long-term effects of chronic stress are cardiovascular disease, diabetes, and cancer.
    OBJECTIVE: This study aims to derive an interpretable multiclass machine learning model for predicting chronic stress levels and factors protecting against chronic stress based on representative nationwide data from the German Health Interview and Examination Survey for Adults, which is part of the national health monitoring program.
    METHODS: A data set from the German Health Interview and Examination Survey for Adults study including demographic, clinical, and laboratory data from 5801 participants was analyzed. A multiclass eXtreme Gradient Boosting (XGBoost) model was constructed to classify participants into 3 categories including low, middle, and high chronic stress levels. The model\'s performance was evaluated using the area under the receiver operating characteristic curve, precision, recall, specificity, and the F1-score. Additionally, SHapley Additive exPlanations was used to interpret the prediction XGBoost model and to identify factors protecting against chronic stress.
    RESULTS: The multiclass XGBoost model exhibited the macroaverage scores, with an area under the receiver operating characteristic curve of 81%, precision of 63%, recall of 52%, specificity of 78%, and F1-score of 54%. The most important features for low-level chronic stress were male gender, very good general health, high satisfaction with living space, and strong social support.
    CONCLUSIONS: This study presents a multiclass interpretable prediction model for chronic stress in adults in Germany. The explainable artificial intelligence technique SHapley Additive exPlanations identified relevant protective factors for chronic stress, which need to be considered when developing interventions to reduce chronic stress.
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  • 文章类型: Journal Article
    背景:在医疗保健方面,索赔数据和电子健康记录(EHR)中的诊断代码在数据驱动的决策中起着重要作用。使用患者诊断代码来预测未来结果或描述发病率的任何分析都需要由基于字符串的诊断代码组成的诊断配置文件的数字表示。这些数值表示对于机器学习模型尤其重要。最常见的是,已使用二进制编码表示,通常用于诊断的子集。在现实世界的医疗保健应用中,出现了几个问题:即使潜在疾病相同,患者档案也显示出高变异性,他们可能有差距,不包含所有可用的信息,必须考虑大量适当的诊断。
    目的:我们在此介绍Pat2Vec,一种自监督的机器学习框架,其灵感来自基于神经网络的自然语言处理,该框架将完整的诊断配置文件嵌入到一个小的实值数值向量中。
    方法:基于德国门诊索赔数据,根据国际疾病和相关健康问题统计分类的诊断代码,第十次修订(ICD-10),我们发现了一个最佳的矢量化嵌入模型的病人诊断配置文件与贝叶斯优化的超参数。校准过程通过使用不同的机器学习算法(线性和逻辑回归以及梯度提升树)聚合不同的回归和分类任务的度量来确保用于医疗保健相关任务的鲁棒嵌入模型。针对二进制编码最常见诊断的基线模型对模型进行测试。该研究使用了2016年至2019年超过1000万患者的诊断概况和补充数据,并基于德国最大的门诊索赔数据集。为了描述医疗保健中的亚群,我们识别了聚类(通过基于密度的聚类),并在2D中可视化了患者向量(通过使用均匀流形近似的降维).此外,我们应用我们的矢量化模型来预测基于患者诊断的前瞻性药物处方成本.
    结果:我们的最终模型在尺寸相等的情况下优于基线模型(二进制编码)。它们对缺失的数据更健壮,并显示出巨大的性能提升,特别是在较低的维度上,演示了嵌入模型对非线性信息的压缩。在未来,其他医疗保健数据来源可以整合到当前的基于诊断的框架中.其他研究人员可以将我们公开共享的嵌入模型应用于他们自己的诊断数据。
    结论:我们设想了Pat2Vec的广泛应用,这将提高医疗保健质量,包括患者监测中的个性化预防和信号检测,以及基于我们的数据驱动的机器学习框架确定的子队列的医疗保健资源规划。
    BACKGROUND: In health care, diagnosis codes in claims data and electronic health records (EHRs) play an important role in data-driven decision making. Any analysis that uses a patient\'s diagnosis codes to predict future outcomes or describe morbidity requires a numerical representation of this diagnosis profile made up of string-based diagnosis codes. These numerical representations are especially important for machine learning models. Most commonly, binary-encoded representations have been used, usually for a subset of diagnoses. In real-world health care applications, several issues arise: patient profiles show high variability even when the underlying diseases are the same, they may have gaps and not contain all available information, and a large number of appropriate diagnoses must be considered.
    OBJECTIVE: We herein present Pat2Vec, a self-supervised machine learning framework inspired by neural network-based natural language processing that embeds complete diagnosis profiles into a small real-valued numerical vector.
    METHODS: Based on German outpatient claims data with diagnosis codes according to the International Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10), we discovered an optimal vectorization embedding model for patient diagnosis profiles with Bayesian optimization for the hyperparameters. The calibration process ensured a robust embedding model for health care-relevant tasks by aggregating the metrics of different regression and classification tasks using different machine learning algorithms (linear and logistic regression as well as gradient-boosted trees). The models were tested against a baseline model that binary encodes the most common diagnoses. The study used diagnosis profiles and supplementary data from more than 10 million patients from 2016 to 2019 and was based on the largest German ambulatory claims data set. To describe subpopulations in health care, we identified clusters (via density-based clustering) and visualized patient vectors in 2D (via dimensionality reduction with uniform manifold approximation). Furthermore, we applied our vectorization model to predict prospective drug prescription costs based on patients\' diagnoses.
    RESULTS: Our final models outperform the baseline model (binary encoding) with equal dimensions. They are more robust to missing data and show large performance gains, particularly in lower dimensions, demonstrating the embedding model\'s compression of nonlinear information. In the future, other sources of health care data can be integrated into the current diagnosis-based framework. Other researchers can apply our publicly shared embedding model to their own diagnosis data.
    CONCLUSIONS: We envision a wide range of applications for Pat2Vec that will improve health care quality, including personalized prevention and signal detection in patient surveillance as well as health care resource planning based on subcohorts identified by our data-driven machine learning framework.
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  • 文章类型: Journal Article
    信息,作为最难以捉摸的主题,是所有思想形式的核心,治理,经济结构,科学,和社会。信息监管,尤其是在医疗保健领域,在全球范围内被证明是一项艰巨的任务,鉴于缺乏定性框架和对信息(或数据)本身的概念和属性的理解。总体定性框架的介绍,包括对信息的定性分析,数据,和知识,将是有价值的,对划定监管有很大帮助,伦理,和战略轨迹。此外,这个框架提供了关于(1)数据隐私和保护的见解(和答案);(2)信息之间的划分,数据,和基于信任的重要概念的知识;(3)建立开放社会和制度的必要条件的结构化方法,保持这种开放性,基于卡尔·波普尔和乔治·威廉·弗里德里希·黑格尔的工作;(4)促进自治和自由并保护开放社会的积极代理方法;(5)基于弗里德里希·哈耶克的工作的数据治理机制,构建了当前的法律-道德-金融和社会社会。这对于有关权利和义务的范围的问题是有见地的,生物体和自由的程度,以及分布式网络系统中的关系结构。这个框架提供了巨大的价值;此外,它提供了关于学术文化的批判性见解和想法(并揭示了它们之间的相互作用),政治,科学,社会,和社会衰败。请注意,根据这份手稿中表达的想法,例如结合个人经验(从而弥补康德和笛卡尔差距),将使用第一人称视角,在相关的地方。
    Information, as the most elusive subject, is central to all forms of thought, governance, economic structure, science, and society. Regulation of information, especially within the healthcare field, is proving to be a difficult task globally, given the lack of a qualitative framework and understanding of the concept and properties of information (or data) itself. The presentation of the overall qualitative framework, comprising a qualitative analysis of information, data, and knowledge, will be valuable and of great assistance in delineating regulatory, ethical, and strategic trajectories. In addition, this framework provides insights (and answers) regarding (1) data privacy and protection; (2) delineations between information, data, and knowledge based on the important notion of trust; (3) a structured approach to establishing the necessary conditions for an open society and system, and the maintenance of said openness, based on the work of Karl Popper and Georg Wilhelm Friedrich Hegel; (4) an active agent approach that promotes autonomy and freedom and protects the open society; and (5) a data governance mechanism based on the work of Friedrich Hayek, which structures the current legal-ethical-financial and social society. This is insightful for questions relating to the extent of rights and duties, the extent of biological bodies and freedom, and the structure of relations in distributed networked systems. There is great value offered in this framework; furthermore, it provides critical insights and thoughts about (and uncovers the interplay between) academic culture, politics, science, society, and societal decay. Note that, in line with the ideas expressed in this manuscript, such as incorporation of personal experience (thereby mending the Kantian and Cartesian gap), a first-person perspective will be used, where relevant.
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  • 文章类型: Journal Article
    我们旨在评估危险人群中弓形虫免疫球蛋白的唾液和血清阳性率,并评估靶向TgERP的药物对接。在亚历山大大学医院的门诊诊所进行了一项横断面研究。从2022年9月至2023年11月,共有192名参与者参加。ELISA法测定血清和唾液中抗弓形虫IgG和IgM。Silico研究检查了TgERP蛋白-蛋白相互作用(PPI)与促炎细胞因子受体,抗炎细胞因子,细胞周期进程调节蛋白,增殖标记,和核包膜完整性相关蛋白LaminB1。我们的发现揭示了反T.血清(66.1%)和唾液(54.7%)中检测到刚地IgG,2.1%的样本IgM阳性。唾液IgG有75.59%的敏感性,86.15%特异性,91.40%PPV,64.40%NPP,准确度为79.17%,与血清IgG相当。另一方面,灵敏度,特异性,PPV,NPV,检测唾液IgM的准确率为75.0%,99.47%,75.0%,99.47%,98.96%。AUC0.859表示良好的鉴别力。经过检查的合成药物和天然产物可以靶向TgERP的特定氨基酸残基,这些残基位于与LB1和Ki67相同的结合界面上,阻碍他们的互动。因此,唾液样本可能是一种有前途的诊断方法.所研究的药物可以抵消TgERP的促炎作用。
    We aimed to assess salivary and seroprevalence of Toxoplasma immunoglobulins in risky populations and evaluate drug docking targeting TgERP. A cross-sectional study was conducted in Alexandria University hospitals\' outpatient clinics. 192 participants were enrolled from September 2022 to November 2023. Anti-Toxoplasma IgG and IgM were determined in serum and saliva by ELISA. An in-Silico study examined TgERP\'s protein-protein interactions (PPIs) with pro-inflammatory cytokine receptors, anti-inflammatory cytokine, cell cycle progression regulatory proteins, a proliferation marker, and nuclear envelope integrity-related protein Lamin B1. Our findings revealed that anti-T. gondii IgG were detected in serum (66.1%) and saliva (54.7%), with 2.1% of both samples were positive for IgM. Salivary IgG had 75.59% sensitivity, 86.15% specificity, 91.40% PPV, 64.40% NPP, 79.17% accuracy and fair agreement with serum IgG. On the other hand, the sensitivity, specificity, PPV, NPV, and accuracy in detecting salivary IgM were 75.0%, 99.47%, 75.0%, 99.47%, and 98.96%. AUC 0.859 indicates good discriminatory power. Examined synthetic drugs and natural products can target specific amino acids residues of TgERP that lie at the same binding interface with LB1 and Ki67, subsequently, hindering their interaction. Hence, salivary samples can be a promising diagnostic approach. The studied drugs can counteract the pro-inflammatory action of TgERP.
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  • 文章类型: Journal Article
    目标:挪威,像其他福利国家一样,寻求利用数据来改变其压力很大的公共医疗系统。虽然管理者将是这样做的核心,我们缺乏了解他们将如何具体这样做,以及他们在什么约束和期望下运作。公共来源,就像这里调查的挪威政策文件一样,为这种管理工作的出现提供重要的背景。因此,本文旨在分析挪威关键政策文件如何在健康管理中解释数据使用。
    方法:我们使用“面向实践”的框架分析了五个值得注意的政策文件,将这些视为关于医疗机构管理使用数据的“组织愿景”(OVs)的竞技场。这个框架认为文件不仅是评论一个主题的文本,而且是制定的话语工具,谈判和塑造具有国家重要性的问题,例如对健康管理中数据使用的期望。
    结果:我们确定的OVs预示着健康管理的大胆未来,通过互连的信息系统支持数据使用,这些系统可按需提供相关信息。这些OVs类似于“基于证据的管理”的论述,“但在重要方面有所不同。经理始终被视为可以从使用二级数据中受益的关键利益相关者,但这需要整个卫生系统更好的数据集成。尽管具有前瞻性,我们发现在实际方面存在相当大的歧义,健康管理中数据使用的社会和认知维度。我们的分析要求重新定义,通过摆脱“数据驱动”健康管理的炒作,转向以经验为导向的健康管理,“以数据为中心”的方法,认识到二级数据管理工作的定位和关系性质。
    结论:通过在挪威卫生政策环境中探索OVs,这项研究增加了我们对医疗保健管理者使用数据的期望的理解。鉴于挪威高度数字化的卫生系统,我们的分析与其他国家的卫生服务有关。
    OBJECTIVE: Norway, like other welfare states, seeks to leverage data to transform its pressured public healthcare system. While managers will be central to doing so, we lack knowledge about how specifically they would do so and what constraints and expectations they operate under. Public sources, like the Norwegian policy documents investigated here, provide important backdrops against which such managerial work emerges. This article therefore aims to analyze how key Norwegian policy documents construe data use in health management.
    METHODS: We analyzed five notable policy documents using a \"practice-oriented\" framework, considering these as arenas for \"organizing visions\" (OVs) about managerial use of data in healthcare organizations. This framework considers documents as not just texts that comment on a topic but as discursive tools that formulate, negotiate and shape issues of national importance, such as expectations about data use in health management.
    RESULTS: The OVs we identify anticipate a bold future for health management, where data use is supported through interconnected information systems that provide relevant information on demand. These OVs are similar to discourse on \"evidence-based management,\" but differ in important ways. Managers are consistently framed as key stakeholders that can benefit from using secondary data, but this requires better data integration across the health system. Despite forward-looking OVs, we find considerable ambiguity regarding the practical, social and epistemic dimensions of data use in health management. Our analysis calls for a reframing, by moving away from the hype of \"data-driven\" health management toward an empirically-oriented, \"data-centric\" approach that recognizes the situated and relational nature of managerial work on secondary data.
    CONCLUSIONS: By exploring OVs in the Norwegian health policy landscape, this study adds to our growing understanding of expectations towards healthcare managers\' use of data. Given Norway\'s highly digitized health system, our analysis has relevance for health services in other countries.
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  • 文章类型: Journal Article
    人们越来越希望一起研究神经发育障碍(NDD),以了解共同之处,以制定通用的健康促进策略并改善临床治疗。在涉及NDD儿童的研究中收集的通用数据元素(CDE)为回答有临床意义的问题提供了机会。我们进行了回顾,通过各种研究收集的不同NDD儿童睡眠相关数据的二次分析。本文的目的是分享数据管理方面的经验教训,排序规则,以及对NDD内外儿童的睡眠研究的协调,安大略省大脑研究所(OBI)的合作研究网络。三个合作研究网络贡献了人口统计数据和与睡眠有关的数据,内化症状,与健康相关的生活质量,患有六种不同NDD的儿童的疾病严重程度:自闭症谱系障碍;注意力缺陷/多动障碍;强迫症;智力障碍;脑瘫和癫痫。数据协调程序,派生,共享和合并,并详细描述了与疾病严重程度和睡眠障碍有关的示例。数据协调程序产生了重要的经验教训:优先考虑CDE的收集,以确保数据的完整性;确保上传未处理的数据进行协调,以促进及时的分析程序;在项目验证时保持与数据字典一致的变量命名的价值;以及与研究网络定期举行会议以讨论和克服数据协调方面的挑战的价值。从研究开始时涉及的所有研究网络的购买和集中式基础设施(OBI)的监督确定了合作收集CDE并促进数据协调以改善NDD儿童结果的重要性。
    There is an increasing desire to study neurodevelopmental disorders (NDDs) together to understand commonalities to develop generic health promotion strategies and improve clinical treatment. Common data elements (CDEs) collected across studies involving children with NDDs afford an opportunity to answer clinically meaningful questions. We undertook a retrospective, secondary analysis of data pertaining to sleep in children with different NDDs collected through various research studies. The objective of this paper is to share lessons learned for data management, collation, and harmonization from a sleep study in children within and across NDDs from large, collaborative research networks in the Ontario Brain Institute (OBI). Three collaborative research networks contributed demographic data and data pertaining to sleep, internalizing symptoms, health-related quality of life, and severity of disorder for children with six different NDDs: autism spectrum disorder; attention deficit/hyperactivity disorder; obsessive compulsive disorder; intellectual disability; cerebral palsy; and epilepsy. Procedures for data harmonization, derivations, and merging were shared and examples pertaining to severity of disorder and sleep disturbances were described in detail. Important lessons emerged from data harmonizing procedures: prioritizing the collection of CDEs to ensure data completeness; ensuring unprocessed data are uploaded for harmonization in order to facilitate timely analytic procedures; the value of maintaining variable naming that is consistent with data dictionaries at time of project validation; and the value of regular meetings with the research networks to discuss and overcome challenges with data harmonization. Buy-in from all research networks involved at study inception and oversight from a centralized infrastructure (OBI) identified the importance of collaboration to collect CDEs and facilitate data harmonization to improve outcomes for children with NDDs.
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