RT Journal Article
SR Electronic
T1 Mental health service users’ perceptions of data sharing and data protection: a short qualitative report
JF BMJ Health & Care Informatics
FD BMJ Publishing Group Ltd
SP 239
OP 242
DO 10.14236/jhi.v25i4.1033
VO 25
IS 4
A1 Emily Satinsky
A1 Corine Driessens
A1 David Crepaz-Keay
A1 Antonis A. Kousoulis
YR 2018
UL http://informatics.bmj.com/content/25/4/239.abstract
AB 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.