期刊
BMJ OPEN
卷 13, 期 10, 页码 -出版社
BMJ PUBLISHING GROUP
DOI: 10.1136/bmjopen-2022-069925
关键词
Health policy; Information management; Information technology; Health informatics
Real-world data, captured primarily for service provision, can also be used for research or commissioning. However, the underutilization of real-world data for secondary purposes is often due to risk aversion and complex governance processes. By discussing key legal and information governance frameworks, we aim to reduce the perception of data governance as a barrier and enable greater public benefit.
Real-world data encompass data primarily captured for the provision or operation of services, for example, electronic health records for direct care purposes, but which may have secondary uses for informing research or commissioning. Public benefit is potentially forfeited by the underutilisation of real-world data for secondary uses, in part due to risk aversion when faced with the prospect of navigating necessary and important data governance processes. Such processes can be perceived as complex, daunting, time-consuming and exposing organisations to risk. By providing an overview description and discussion around the role of six key legal and information governance frameworks and their role regarding responsible data access, linkage and sharing, our intention is to make data governance a less daunting prospect and reduce the perception that it is a barrier to secondary uses, thus enabling public benefit.
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