Mental health service users' perceptions of data sharing and data protection: a qualitative report

Emily Nina Satinsky, Corine Driessens, David Crepaz-Keay, Antonis Kousoulis


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 sharing; data protection; qualitative research; data linkage; mental health; transparency; trust

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de Lusignan S. Effective pseudonymisation and explicit statements of public interest to ensure the benefits of sharing health data for research, quality improvement and health service management outweigh the risks. Journal of Innovation in Health Informatics 2014;21(2):61–3. PMid:24841404.

Aitken M, Jorre JD, Pagliari C, Jepson R, Cunningham-Burley S. Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Medical Ethics 2016;17(1):73. PMid:27832780; PMCid:PMC5103425.

Ipsos MORI Social Research Institute. The one-way mirror: public attitudes to commercial access to health data. Wellcome Trust 2016;123–32.

Williams H, Spencer K, Sanders C, Lund D, Whitley EA, Kaye J, et al. Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research. JMIR Medical Informatics 2015;3(1):e3. PMid:25586934; PMCid:PMC4319083.

Torous JB, Chan SR, Yellowlees PM, Boland R. To use or not? Evaluating ASPECTS of smartphone apps and mobile technology for clinical care in psychiatry. Journal of Clinical Psychiatry 2016;77(6):e734–8. PMid:27136691.

Donker T, Petrie K, Proudfoot J, Clarke J, Birch MR, Christensen H. Smartphones for smarter delivery of mental health programs: a systematic review. Journal of Medical Internet Research 2013;15(11):e247.



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