Honey Anne, Hancock Nicola, Glover Helen, Scanlan Justin Newton, Cao Yidan, Povolny Andrew, Orr Mark, Rose Grenville, Govindasamy Sumathi, Smith Lorraine, Ahmadapour Naseem
Faculty of Medicine and Health, The University of Sydney, Susan Wakil Health Building (D18), Camperdown, NSW, 2006, Australia.
Enlightened Consultants, PO Box 7361, Redland Bay, QLD, 4165, Australia.
BMC Psychiatry. 2024 Dec 18;24(1):932. doi: 10.1186/s12888-024-06347-1.
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?
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.
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.
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.
信息共享和信息隐私是心理健康服务中的重要问题。然而，对于使用心理健康服务的澳大利亚人在这些问题上的观点，我们知之甚少。本文探讨了以下研究问题：在澳大利亚，使用心理健康服务的人对其健康信息在心理健康及相关系统中的收集和使用有哪些担忧？
参与者为16名曾使用过心理健康服务的人，他们参与了一系列协同设计研讨会，这是一项更大规模研究的一部分。开展了焦点小组活动，要求参与者讨论并制作一张可视化地图，以描述他们在分享与心理健康和康复相关信息方面的集体经历。使用定性内容分析法和持续比较分析的编码技术对数据进行了分析。
参与者对各组织持有和获取的信息有一种不可知感。他们描述了向各种各样的实体提供信息，但并不总是以自由或知情的方式。他们认为关于自己的其他信息是由他人生成和/或分享的，而他们往往对此并不知情或未经其同意。参与者报告称，这些信息的收集和存储对他们来说都存在风险，他们有时会限制自己提供的信息。为了提高对自身信息使用的舒适度，参与者建议进行定制化和透明的信息收集；个人能够访问并输入自己的信息；以及仅为他们的利益使用信息。
信任是信息提供和信息共享积极体验的关键。建立信任的核心是促进更多选择和控制的透明做法。
