Understanding how to build a social licence for using novel linked datasets for planning and research in Kent, Surrey and Sussex: results of deliberative focus groups.

Autor:	Ford E; Brighton and Sussex Medical School, Brighton, UK., Rees-Roberts M; Centre for Health Services Studies, University of Kent, Canterbury, Kent, UK., Stanley K; Brighton and Sussex Medical School, Brighton, UK., Goddard K; Brighton and Sussex Medical School, Brighton, UK., Giles S; Digital Innovation Theme Public Advisor, NIHR ARC -KSS (Applied Research Collaboration Kent, Surrey, and Sussex)., Armes J; University of Surrey, Guildford, UK., Ikhile D; Brighton and Sussex Medical School, Brighton, UK., Madzvamuse A; University of Sussex, Brighton, UK.; University of British Columbia, Canada., Spencer-Hughes V; East Sussex County Council, Lewes, Sussex, UK., George A; Kent County Council, Maidstone, Kent, UK., Farmer C; Centre for Health Services Studies, University of Kent, Canterbury, Kent, UK., Cassell J; Brighton and Sussex Medical School, Brighton, UK.
Jazyk:	angličtina
Zdroj:	International journal of population data science [Int J Popul Data Sci] 2023 Jan 30; Vol. 5 (3), pp. 2114. Date of Electronic Publication: 2023 Jan 30 (Print Publication: 2020).
DOI:	10.23889/ijpds.v5i3.2114
Abstrakt:	Introduction: Digital programmes in the newly created NHS integrated care boards (ICBs) in the United Kingdom mean that curation and linkage of anonymised patient data is underway in many areas for the first time. In Kent, Surrey and Sussex (KSS), in Southeast England, public health teams want to use these datasets to answer strategic population health questions, but public expectations around use of patient data are unknown. Objectives: We aimed to engage with citizens of KSS to gather their views and expectations of data linkage and re-use, through deliberative discussions. Methods: We held five 3-hour deliberative focus groups with 79 citizens of KSS, presenting information about potential uses of data, safeguards, and mechanisms for public involvement in governance and decision making about datasets. After each presentation, participants discussed their views in facilitated small groups which were recorded, transcribed and analysed thematically. Results: The focus groups generated 15 themes representing participants' views on the benefits, risks and values for safeguarding linked data. Participants largely supported use of patient data to improve health service efficiency and resource management, preventative services and out of hospital care, joined-up services and information flows. Most participants expressed concerns about data accuracy, breaches and hacking, and worried about commercial use of data. They suggested that transparency of data usage through audit trails and clear information about accountability, ensuring data re-use does not perpetuate stigma and discrimination, ongoing, inclusive and valued involvement of the public in dataset decision-making, and a commitment to building trust, would meet their expectations for responsible data use. Conclusions: Participants were largely favourable about the proposed uses of patient linked datasets but expected a commitment to transparency and public involvement. Findings were mapped to previous tenets of social license and can be used to inform ICB digital programme teams on how to proceed with use of linked datasets in a trustworthy and socially acceptable way. Competing Interests: Statement on conflicts of interest: The authors declare no conflict of interest.
Databáze:	MEDLINE
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