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The following is a summary of “Collection and sharing of health information in mental health and related systems in Australia: perspectives of people who access mental health services,” published in the December 2024 issue of Psychiatry by Honey et al.
Information sharing and privacy are critical concerns in Australian mental health services. However, the perspectives of service users on these issues remain underexplored.
Researchers conducted a retrospective study to explore the concerns of individuals using mental health services in Australia regarding the collection and use of their health information.
They included 16 participants who had accessed mental health services and took part in co-design workshops. Focus group activities were conducted, where participants created a visual map to describe their information-sharing experiences related to mental health and recovery. The data were analyzed using qualitative content analysis and constant comparative analysis.
The results showed participants felt uncertain about the information held and accessed by various organizations. They reported providing information to many entities without full consent or knowledge. Participants believed others shared the information without their consent and viewed the collection and storage of data as risky, sometimes restricting what they shared. To improve comfort, they recommended customized, transparent information collection, access to and input on personal data, and use of information solely for their benefit.
They found that trust was essential for positive experiences with information sharing in mental health services. Transparent practices that provided greater choice and control were crucial in building this trust.
Source: bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-024-06347-1
