Infrastructure and operating processes of PIONEER, the HDR-UK Data Hub in Acute Care and the workings of the Data Trust Committee: a protocol paper.
Infrastructure and operating processes of PIONEER, the HDR-UK Data Hub in Acute Care and the workings of the Data Trust Committee: a protocol paper.
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DOI：
10.1136/bmjhci-2020-100294
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发表时间：
2021-04
影响因子：
4.1
通讯作者：
Sapey E
中科院分区：
文献类型：
--
作者：
Gallier S;Price G;Pandya H;McCarmack G;James C;Ruane B;Forty L;Crosby BL;Atkin C;Evans R;Dunn KW;Marston E;Crawford C;Levermore M;Modhwadia S;Attwood J;Perks S;Doal R;Gkoutos G;Dormer R;Rosser A;Fanning H;Sapey E
英国健康数据研究指定了七个总部设在英国的中心，以促进健康数据用于研究。先锋是急诊护理的中心。先锋举办了研讨会，患者/公众公民同意关键原则，以指导获取未经同意的、匿名的、常规收集的健康数据。这些都被用来通知协议。本文描述了先锋公司的基础设施和数据访问流程。先锋是一个研究数据库和分析环境，将定期收集的社区、救护车和医院医疗保健提供者的健康数据联系起来。先锋的最终目标是通过使健康数据可被发现和访问，供国家医疗服务、学术和商业组织研究，从而改善患者的健康和护理。先锋方案纳入了在公共/患者研讨会上确定的原则。这包括由数据信托委员会审查的所有数据访问请求，该委员会是一群公众公民，他们在获得许可访问之前就是否应该支持这些请求提供建议。东米德兰兹-德比REC(20/EM/0158)：保密咨询小组(20/CAG/0084)。Www.PIONEERdatahub.co.uk
Health Data Research UK designated seven UK-based Hubs to facilitate health data use for research. PIONEER is the Hub in Acute Care. PIONEER delivered workshops where patients/public citizens agreed key principles to guide access to unconsented, anonymised, routinely collected health data. These were used to inform the protocol. This paper describes the PIONEER infrastructure and data access processes. PIONEER is a research database and analytical environment that links routinely collected health data across community, ambulance and hospital healthcare providers. PIONEER aims ultimately to improve patient health and care, by making health data discoverable and accessible for research by National Health Service, academic and commercial organisations. The PIONEER protocol incorporates principles identified in the public/patient workshops. This includes all data access requests being reviewed by the Data Trust Committee, a group of public citizens who advise on whether requests should be supported prior to licensed access. East Midlands–Derby REC (20/EM/0158): Confidentiality Advisory Group (20/CAG/0084). www.PIONEERdatahub.co.uk
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影响因子：
2.6
作者：
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