Skip to main content

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

Ford, Elizabeth, Stanley, Kathryn, Rees-Roberts, Melanie, Goddard, Katie, Madzvamuse, Anotida, Armes, Jo, Giles, Sarah (2023) 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. International Journal of Population Data Science, 5 (3). Article Number 2114. ISSN 2399-4908. (doi:10.23889/ijpds.v7i3.2109) (KAR id:98622)

Abstract

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.

Item Type: Article
DOI/Identification number: 10.23889/ijpds.v7i3.2109
Uncontrolled keywords: Data linkage; public engagement; focus groups; patient privacy; social license.
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
Funders: National Institute for Health Research (https://ror.org/0187kwz08)
Depositing User: George Austin-Coskry
Date Deposited: 01 Dec 2022 16:09 UTC
Last Modified: 24 Nov 2023 14:45 UTC
Resource URI: https://kar.kent.ac.uk/id/eprint/98622 (The current URI for this page, for reference purposes)

University of Kent Author Information

Rees-Roberts, Melanie.

Creator's ORCID: https://orcid.org/0000-0002-7121-0414
CReDIT Contributor Roles:
  • Depositors only (login required):

Total unique views for this document in KAR since July 2020. For more details click on the image.