Cambridge Public Health, Interdisciplinary Research Centre, Forvie Site, Cambridge Biomedical Campus, Cambridge, UK.
PHG Foundation, 2 Worts Causeway, University of Cambridge, Cambridge, UK.
BMC Public Health. 2022 Jun 28;22(1):1263. doi: 10.1186/s12889-022-13187-9.
Improving data access, sharing, and linkage across local authorities and other agencies can contribute to improvements in population health. Whilst progress is being made to achieve linkage and integration of health and social care data, issues still exist in creating such a system. As part of wider work to create the Cambridge Child Health Informatics and Linked Data (Cam-CHILD) database, we wanted to examine barriers to the access, linkage, and use of local authority data.
A systematic literature search was conducted of scientific databases and the grey literature. Any publications reporting original research related to barriers or enablers of data linkage of or with local authority data in the United Kingdom were included. Barriers relating to the following issues were extracted from each paper: funding, fragmentation, legal and ethical frameworks, cultural issues, geographical boundaries, technical capability, capacity, data quality, security, and patient and public trust.
Twenty eight articles were identified for inclusion in this review. Issues relating to technical capacity and data quality were cited most often. This was followed by those relating to legal and ethical frameworks. Issue relating to public and patient trust were cited the least, however, there is considerable overlap between this topic and issues relating to legal and ethical frameworks.
This rapid review is the first step to an in-depth exploration of the barriers to data access, linkage and use; a better understanding of which can aid in creating and implementing effective solutions. These barriers are not novel although they pose specific challenges in the context of local authority data.
改善地方当局和其他机构之间的数据访问、共享和链接,可以促进人口健康的改善。虽然在实现健康和社会保健数据的链接和整合方面正在取得进展,但在创建这样一个系统方面仍存在问题。作为创建剑桥儿童健康信息学和链接数据(Cam-CHILD)数据库的更广泛工作的一部分,我们希望研究获取、链接和使用地方当局数据的障碍。
对科学数据库和灰色文献进行了系统的文献检索。纳入了报告与英国地方当局数据的链接或与之相关的障碍或促进因素的原始研究的任何出版物。从每篇论文中提取与以下问题相关的障碍:资金、碎片化、法律和伦理框架、文化问题、地理边界、技术能力、能力、数据质量、安全性以及患者和公众信任。
确定了 28 篇文章纳入本综述。技术能力和数据质量问题被引用最多。其次是法律和伦理框架问题。公众和患者信任问题被引用最少,但与法律和伦理框架问题有相当大的重叠。
这是对数据访问、链接和使用障碍进行深入探讨的第一步;更好地了解这些障碍可以帮助创建和实施有效的解决方案。这些障碍虽然不是新的,但在地方当局数据的背景下,它们构成了具体的挑战。