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Integrating electronic health records from different sources across the UK: lessons from a record linkage study

机译:整合来自英国不同来源的电子健康记录:来自记录链接研究的经验教训

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BackgroundHarmonisation of different data sources from various electronic health records (EHRs) across systems enhances the potential scope and granularity of data available to health data research. ObjectiveTo describe data harmonisation of routine electronic healthcare records in Wales and Scotland linked to a UK longitudinal birth cohort, the Millennium Cohort Study (MCS). MethodsComparable secondary care data was linked, with parental consent, to MCS information for 1838 and 1431 children participating in MCS and residing in Wales and Scotland, by assigning, respectively, unique Anonymised Linkage Fields to personbased records in the privacy protecting Secure Anonymised Information Linkage (SAIL) databank at Swansea University, and by the National Health Service (NHS) Information Standards Division. Survey and non-response weights were created to account for the clustered sample, sample attrition and consent to linkage. Heterogeneous variables from the Patient Episode Dataset for Wales, Emergency Department Data Set for Wales, Scottish Medical Record 01 and Accident and Emergency dataset for Scotland were harmonised enabling data to be pooled and standardised for research. FindingsOverall linkage to harmonised health care data was achieved for 98.9% (99.9% for Wales and 97.6% for Scotland) of consented MCS participants. 66% of children experienced at least one hospital admission (total 5747 hospital admissions) up totheir 14th birthday, while 60% attended A&E departments at least once (total 5221 attendances) between their 9th and 14th birthday. We managed date granularity by generating random dates of birth, standardising periods of data collection,identifying inconsistencies and then mapping and bridging differences in definitions of periods of care across countries and datasets. ConclusionsCombining and harmonising data from multiple sources and linking them to information from a longitudinal cohort create useful resources for population health research. These methods are reproducible and can be utilised by other researchersand projects.
机译:背景跨系统的各种电子健康记录(EHR)中不同数据源的统一增强了可用于健康数据研究的数据的潜在范围和粒度。目的描述与英国纵向出生队列相关的威尔士和苏格兰常规电子医疗记录的数据协调,即千年队列研究(MCS)。方法在父母的同意下,通过为隐私保护安全匿名信息链接中的个人记录分配唯一的匿名链接字段,将类似的二级医疗数据链接到1838和1431名参加MCS并居住在威尔士和苏格兰的儿童的MCS信息斯旺西大学的数据库(SAIL)和国家卫生局(NHS)信息标准司的数据库。创建了调查权重和无响应权重,以说明集群样本,样本损耗和同意链接的情况。来自威尔士的患者情节数据集,威尔士的急诊室数据集,苏格兰医疗记录01和苏格兰的事故和紧急情况数据集的异类变量得以统一,从而可以对数据进行汇总和标准化以进行研究。结果同意的MCS参与者达到了98.9%(威尔士为99.9%,苏格兰为97.6%)与统一的卫生保健数据的整体联系。 66%的儿童在其14岁生日之前至少经历了一次入院(总共5747次入院),而60%的孩子在9岁至14岁生日之间至少去过一次急诊科(总共5221次出诊)。我们通过生成随机出生日期,标准化数据收集周期,识别不一致之处,然后绘制和弥合国家和数据集间护理期间定义的差异来管理日期粒度。结论组合和协调来自多个来源的数据,并将其与纵向队列的信息相链接,为人口健康研究创造了有用的资源。这些方法具有可重现性,可供其他研究人员和项目使用。

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