Jones, M.C. orcid.org/0000-0001-7929-2808, Stone, T., Mason, S.M. et al. (2 more authors) (2023) Navigating data governance associated with real-world data for public benefit: an overview in the UK and future considerations. BMJ Open, 13 (10). e069925. ISSN 2044-6055
Abstract
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.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © Author(s). This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by nc/4.0/. |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Academic Services (Leeds) > IT |
Depositing User: | Symplectic Publications |
Date Deposited: | 12 Jan 2024 17:03 |
Last Modified: | 12 Jan 2024 17:03 |
Published Version: | http://dx.doi.org/10.1136/bmjopen-2022-069925 |
Status: | Published |
Publisher: | BMJ |
Identification Number: | 10.1136/bmjopen-2022-069925 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:204991 |