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Understanding Public Priorities and Perceptions of the Use of Linked Healthcare Data in South East England

Ford, Elizabeth and Stanley, Katryn and Rees-Roberts, Melanie and Giles, Sarah and Goddard, Katie and Armes, Jo (2022) Understanding Public Priorities and Perceptions of the Use of Linked Healthcare Data in South East England. In: Challenges of Trustable AI and Added-Value on Health. Studies in Health Technology and Informatics . IOS Press, pp. 594-598. ISBN 978-1-64368-284-6. E-ISBN 978-1-64368-285-3. (doi:10.3233/SHTI220538) (KAR id:95627)


The counties of Kent, Surrey and Sussex (KSS) in South East England are creating anonymized, linked databases of healthcare records for audit, service planning and research for the first time. We consulted with 79 citizens from KSS in 5 deliberative focus groups, asking about perceived benefits and concerns regarding these new data assets. Participants hoped the linked datasets could be used for joining up care and information, improving efficiency, and improving healthcare provision, but were concerned about missing and inaccurate data, data breaches and hacking, use of data by profit-making organisations, and stigma and discrimination. Findings will be used to underpin governance and engagement strategies for integrated datasets in KSS.

Item Type: Book section
DOI/Identification number: 10.3233/SHTI220538
Uncontrolled keywords: Linked data, patient data, public engagement, data governance, privacy
Subjects: H Social Sciences
Divisions: Divisions > Division for the Study of Law, Society and Social Justice > School of Social Policy, Sociology and Social Research > Centre for Health Services Studies
Depositing User: Melanie Rees-Roberts
Date Deposited: 30 Jun 2022 14:26 UTC
Last Modified: 01 Jul 2022 08:21 UTC
Resource URI: (The current URI for this page, for reference purposes)

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