JMIR Publications

ABSTRACT

Background:

Sharing patient data can help drive scientific advances and improve patient care. Service users have concerns about how their data is used, but these have not been explored in depth.  

Objective:

To investigate mental health service user’s views on acceptable data sharing to provide clear recommendations for future data sharing systems.

Methods:

Four focus groups with a further 4 member checking groups were conducted online between October 2020 and March 2021, with a total of 22 service users in the UK. A thematic analysis was used to identify themes.   

Results:

Six main themes, with several sub-themes were identified: (1) the purpose of data sharing: for-profit, for public good and continuation of care; (2) discrimination through diagnostic overshadowing alongside institutional discrimination; (3) safeguarding data by preserving anonymity and confidentiality, strengthening security measures and holding organisations accountable; (4) data accuracy; (5) informed consent: increasing transparency about data usage and choice; and (6) service user involvement in system governance to provide insight and increase security.  

Conclusions:

This study extends the limited research on mental health service users’ views and concerns regarding acceptable data sharing. Recommendations to improve service users’ confidence in the sharing of their data include screening to ensure data sharing benefits the public, providing service users with information about how their data is shared and what for, highlighting existing safeguarding procedures, incorporating service user involvement, and developing tailored training for healthcare professionals to address issues of diagnostic overshadowing and inaccurate health records.