How an electronic health record became a real-world research resource: comparison between London's Whole Systems Integrated Care database and the Clinical Practice Research Datalink
How an electronic health record became a real-world research resource: comparison between London's Whole Systems Integrated Care database and the Clinical Practice Research Datalink
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DOI：
10.1186/s12911-020-1082-7
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发表时间：
2020-04-20
影响因子：
3.5
通讯作者：
Aylin, Paul
中科院分区：
文献类型：
--
作者：
Bottle, Alex;Cohen, Carole;Aylin, Paul
在英国，一些举措已经导致了本地电子病历数据仓库的创建。它们最初是为委托和直接病人护理而开发的，对研究有潜在的用处，但在它们的家乡以外，人们对它们知之甚少。我们描述了一个这样的本地仓库，伦敦西北部的整个系统综合护理（WSIC）数据库，以及它作为“发现”平台的研究潜力。我们将Discover与临床实践研究数据链（CPRD）进行比较，CPRD是一个流行的英国研究数据库，也基于相关的初级保健记录。我们描述了Discover数据库的关键特征，包括范围、架构和治理；描述性分析将人口统计和慢性病患病率与刚果民主共和国进行比较。截至2019年6月，Discover拥有230万名当前注册患者的记录，占伦敦西北部人口的95%；CPRD保持着超过1100万的记录。“发现”的人口与英国和珠三角的总体年龄性别分布相匹配，但在种族上更为多样化。大多数发现慢性疾病患病率与全国发病率相当。与CPRD不同，Discover有可识别的护理组织和邮政编码，允许映射和链接到医疗保健提供者变量，如人员配备，并包括与社会、社区和精神卫生保健的联系。Discover还包括迄今为止超过3000名志愿者的同意接触登记册，用于前瞻性研究。与CPRD一样，Discover也是经过多年开发的，是一种有价值的研究工具，可以作为开发类似数据仓库的其他领域的模型。
Background In the UK, several initiatives have resulted in the creation of local data warehouses of electronic patient records. Originally developed for commissioning and direct patient care, they are potentially useful for research, but little is known about them outside their home area. We describe one such local warehouse, the Whole Systems Integrated Care (WSIC) database in NW London, and its potential for research as the "Discover" platform. We compare Discover with the Clinical Practice Research Datalink (CPRD), a popular UK research database also based on linked primary care records. Methods We describe the key features of the Discover database, including scope, architecture and governance; descriptive analyses compare the population demographics and chronic disease prevalences with those in CPRD. Results As of June 2019, Discover held records for a total of 2.3 million currently registered patients, or 95% of the NW London population; CPRD held records for over 11 million. The Discover population matches the overall age-sex distribution of the UK and CPRD but is more ethnically diverse. Most Discover chronic disease prevalences were comparable to the national rates. Unlike CPRD, Discover has identifiable care organisations and postcodes, allowing mapping and linkage to healthcare provider variables such as staffing, and includes contacts with social, community and mental health care. Discover also includes a consent-to-contact register of over 3000 volunteers to date for prospective studies. Conclusions Like CPRD, Discover has been a number of years in the making, is a valuable research tool, and can serve as a model for other areas developing similar data warehouses.