Mental health service users' perceptions of data sharing and data protection: a qualitative report
Mental health service users' perceptions of data sharing and data protection: a qualitative report
BACKGROUND: To improve health services, social, economic and health data should be shared and linked to create a full narrative of lived experience. Mental health data sharing is often considered a particularly sensitive area. OBJECTIVE: To assess mental health service users' perceptions regarding the current practice of administrative data-driven research. METHOD: We conducted a focus group using case study scenarios. Themes and subthemes were analysed using qualitative methods. RESULTS: Participants were generally happy for data owners to share their health, social and economic data if the purpose was transparent and if the information would inform and improve health policy and practice. Participants were less keen on sharing data through digital applications. CONCLUSION: This case study informs a data linkage study protocol. Research teams and database owners should strive to educate service users on data protection and create dissent opportunities.
data linkage, data protection, data sharing, mental health, qualitative research, transparency, trust
239-242
Satinsky, Emily Nina
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Driessens, Corine
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Crepaz-Keay, David
10025827-7bbe-4553-a4f4-bf09a1e5807e
Kousoulis, Antonis
ea25ec8b-111d-491c-be82-ba4f18658ec8
31 December 2018
Satinsky, Emily Nina
8fdd1c94-53cf-416f-9dca-2feee978013a
Driessens, Corine
59335f14-4ead-4692-9969-7ed9cc1ccf08
Crepaz-Keay, David
10025827-7bbe-4553-a4f4-bf09a1e5807e
Kousoulis, Antonis
ea25ec8b-111d-491c-be82-ba4f18658ec8
Satinsky, Emily Nina, Driessens, Corine, Crepaz-Keay, David and Kousoulis, Antonis
(2018)
Mental health service users' perceptions of data sharing and data protection: a qualitative report.
Journal of Innovation in Health Informatics, 25 (4), .
(doi:10.14236/jhi.v25i4.1033).
Abstract
BACKGROUND: To improve health services, social, economic and health data should be shared and linked to create a full narrative of lived experience. Mental health data sharing is often considered a particularly sensitive area. OBJECTIVE: To assess mental health service users' perceptions regarding the current practice of administrative data-driven research. METHOD: We conducted a focus group using case study scenarios. Themes and subthemes were analysed using qualitative methods. RESULTS: Participants were generally happy for data owners to share their health, social and economic data if the purpose was transparent and if the information would inform and improve health policy and practice. Participants were less keen on sharing data through digital applications. CONCLUSION: This case study informs a data linkage study protocol. Research teams and database owners should strive to educate service users on data protection and create dissent opportunities.
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Accepted/In Press date: December 2018
Published date: 31 December 2018
Keywords:
data linkage, data protection, data sharing, mental health, qualitative research, transparency, trust
Identifiers
Local EPrints ID: 427928
URI: http://eprints.soton.ac.uk/id/eprint/427928
ISSN: 2058-4555
PURE UUID: 3fa541ff-6203-48db-ba12-95a459251080
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Date deposited: 05 Feb 2019 17:30
Last modified: 16 Mar 2024 04:16
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Contributors
Author:
Emily Nina Satinsky
Author:
Corine Driessens
Author:
David Crepaz-Keay
Author:
Antonis Kousoulis
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