Collection and sharing of health information in mental health and related systems in Australia: perspectives of people who access mental health services.

IF 3.4 2区 医学 Q2 PSYCHIATRY
Anne Honey, Nicola Hancock, Helen Glover, Justin Newton Scanlan, Yidan Cao, Andrew Povolny, Mark Orr, Grenville Rose, Sumathi Govindasamy, Lorraine Smith, Naseem Ahmadapour
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Abstract

Background: Information sharing and information privacy are important issues in mental health services. Yet the perspectives of Australians who access mental health services about these issues are poorly understood. This article addresses the research question: What are the concerns of people who use mental health services about the collection and use of their health information in mental health and related systems in Australia?

Methods: Participants were 16 people who had accessed mental health services and were involved in a series of co-design workshops as part of a larger study. Focused group activities were conducted in which participants were asked to discuss and create a visual map to describe their collective experiences of sharing information relating to mental health and recovery. The data were analysed using qualitative content analysis and the coding techniques of constant comparative analysis.

Results: Participants expressed a sense of unknowability about the information held and accessed by various organisations. They described providing information to a wide variety of entities, though not always in a free or informed way. They believed other information held about them had been generated and/or shared by people other than themselves, often without their knowledge or consent. Participants reported that both the collection and storage of this information involved risks for them, and they sometimes restricted the information they provided. To improve their comfort with the use of their information, participants recommended customised and transparent information collection; individuals' access and input to their own information; and use of information only for their benefit.

Conclusions: Trust is key to positive experiences of information provision and information sharing. Central to establishing trust are transparent practices that facilitate greater choice and control.

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来源期刊
BMC Psychiatry
BMC Psychiatry 医学-精神病学
CiteScore
5.90
自引率
4.50%
发文量
716
审稿时长
3-6 weeks
期刊介绍: BMC Psychiatry is an open access, peer-reviewed journal that considers articles on all aspects of the prevention, diagnosis and management of psychiatric disorders, as well as related molecular genetics, pathophysiology, and epidemiology.
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