Service Users' Perspectives on an Integrated Electronic Care Record in Mental Health Care: Qualitative Vignette and Interview Study.

backgroundThere 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.

objectiveThis study aimed to understand mental health care service users' perspectives on an IECR and how it should be used in practice when receiving care.

methodsTen 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.

resultsService 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.

conclusionsAn 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.