Baxter, S., Franklin, M., Haywood, A. et al. (4 more authors) (2023) Sharing real-world data for public benefit: a qualitative exploration of stakeholder views and perceptions. BMC Public Health, 23 (1). 133. ISSN 1471-2458
Abstract
Background
There has been an increasing interest in the use of “real-world” data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base.
Methods
We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action.
Results
Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public.
Conclusion
The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2023. This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
Keywords: | Data sharing, Real world data, Public health, Routine data, Information governance, Integrated care, Qualitative |
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 Jul 2024 15:04 |
Last Modified: | 12 Jul 2024 15:04 |
Published Version: | https://bmcpublichealth.biomedcentral.com/articles... |
Status: | Published |
Publisher: | Springer |
Identification Number: | 10.1186/s12889-023-15035-w |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:214135 |