Understanding public priorities and perceptions of the use of linked healthcare data in South East England

Ford, Elizabeth, Stanley, Kathryn, Rees-Roberts, Melanie, Giles, Sarah, Goddard, Katie and Armes, Jo (2022) Understanding public priorities and perceptions of the use of linked healthcare data in South East England. Stud Health Technol Inform, 294. pp. 594-598. ISSN 0926-9630

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Abstract

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: Article
Keywords: Linked data, data governance, patient data, privacy, public engagement, Databases, Factual, Delivery of Health Care, England, Focus Groups, Health Facilities, Humans
Schools and Departments: Brighton and Sussex Medical School > Primary Care and Public Health
SWORD Depositor: Mx Elements Account
Depositing User: Mx Elements Account
Date Deposited: 09 Jun 2022 16:31
Last Modified: 10 Jun 2022 09:20
URI: http://sro.sussex.ac.uk/id/eprint/106319

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