Kariotis Timothy, Prictor Megan, Gray Kathleen, Chang Shanton
Faculty of Engineering and Information Technology, University of Melbourne, Carlton, Australia.
Melbourne Law School, University of Melbourne, Carlton, Australia.
JMIR Med Inform. 2025 Jun 3;13:e64162. doi: 10.2196/64162.
There have been suggestions that electronic health records (EHRs) should be expanded beyond clinical mental health care services to a broader array of care services that support mental health service users, which we call an integrated electronic care record (IECR). Previous research has considered service users' general views on information being stored and shared via an EHR. However, little consideration has been given to service users' attitudes toward how EHRs should be used in the provision of care or the concept of an IECR.
This study aimed to understand mental health care service users' perspectives on an IECR and how it should be used in practice when receiving care.
Ten people with lived experience of accessing multiple services in Australia's mental health care system were provided with 2 vignettes that depicted fictional service users making decisions about an IECR. Participants were asked to respond to several scenarios that the fictional service users might experience in their journey through the mental health care system with an IECR. Participants provided written responses and took part in a semistructured interview to discuss their responses. An interpretative phenomenological analysis was undertaken, which led to 5 major themes and 15 subthemes being developed.
Service users wanted an IECR that they had control over, supported them as equal partners in their care, and contributed toward more collaborative and proactive mental health care. However, participants were concerned that care professionals' perspectives would be privileged in the IECR and overshadow service users' needs. Participants also had concerns that stigmatizing and discriminatory information documented in their IECR would negatively impact their interactions with the mental health care system and their access to care. Participants saw value in an IECR bringing together information to support collaborative and proactive care. However, participants thought that the benefits of the IECR had to be balanced with potential risks to their privacy. Participants thought that the IECR should contain only information relevant to their care and should be shared only with relevant care professionals. There were concerns that service users might lack the skills, resources, and information required to manage their IECR.
An IECR has the potential to fill the gaps in an increasingly complex and fragmented mental health care system but risks entrenching service users' experiences of stigma and discrimination unless service users are meaningfully involved in their IECR.
有人建议，电子健康记录（EHRs）应从临床精神卫生保健服务扩展到更广泛的支持精神卫生服务使用者的护理服务领域，我们将其称为综合电子护理记录（IECR）。以往的研究考虑了服务使用者对通过电子健康记录存储和共享信息的总体看法。然而，对于服务使用者对电子健康记录在提供护理过程中应如何使用的态度或综合电子护理记录的概念，却很少有人关注。
本研究旨在了解精神卫生保健服务使用者对综合电子护理记录的看法，以及在接受护理时应如何在实践中使用该记录。
向10名在澳大利亚精神卫生保健系统中使用过多种服务的人提供了2个案例，描述了虚构的服务使用者就综合电子护理记录做出决策的情况。参与者被要求对虚构的服务使用者在通过综合电子护理记录的精神卫生保健系统旅程中可能遇到的几种情况做出回应。参与者提供书面答复，并参加了一次半结构化访谈，以讨论他们的答复。进行了一项解释性现象学分析，得出了5个主要主题和15个子主题。
服务使用者希望拥有一个由他们控制的综合电子护理记录，该记录能在护理过程中作为平等伙伴支持他们，并有助于实现更具协作性和主动性的精神卫生保健。然而，参与者担心在综合电子护理记录中护理专业人员的观点会占主导地位，从而掩盖服务使用者的需求。参与者还担心综合电子护理记录中记录的污名化和歧视性信息会对他们与精神卫生保健系统的互动以及获得护理的机会产生负面影响。参与者认为综合电子护理记录将信息整合在一起以支持协作性和主动性护理具有价值。然而，参与者认为综合电子护理记录的好处必须与对他们隐私的潜在风险相平衡。参与者认为综合电子护理记录应只包含与他们的护理相关的信息，并且只应与相关护理专业人员共享。有人担心服务使用者可能缺乏管理其综合电子护理记录所需的技能、资源和信息。
综合电子护理记录有潜力填补日益复杂和分散的精神卫生保健系统中的空白，但除非服务使用者有意义地参与到他们的综合电子护理记录中，否则存在加深服务使用者污名化和歧视经历的风险。
