JMIR Publications

ABSTRACT

Background:

There have been suggestions that electronic health records (EHR) should be expanded beyond just clinical healthcare services to a broader array of services that support mental health service users, which we call an integrated electronic care record (IECR). Previous research has considered service users' general views of information being stored and shared via an EHR. However, little consideration has been given to service users' views on how EHRs should be used in practice or the concept of an IECR.

Objective:

This paper aims to understand mental healthcare service users' perspectives towards an IECR and how it should be used in practice when receiving care.

Methods:

Ten people with lived experience of accessing multiple services in Australia's mental healthcare system were provided with two vignettes that depicted two 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 healthcare system with an IECR. Participants provided written responses and participated in a semi-structured interview to discuss their responses. An interpretative phenomenological analysis was undertaken, which led to five major themes and 15 sub-themes being developed.

Results:

Service users wanted an IECR that they had control over, supported them as equal partners in their care, and contributed towards more collaborative mental healthcare. However, participants were also concerned that care professionals' perspectives would be privileged in the IECR and overshadow service users' needs. Participants also had concerns that stigmatising and discriminatory information might be documented in their IECR and negatively impact their interactions with the mental healthcare 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 information documented in the IECR had to balance the benefits it would contribute to their care with the potential risks to their privacy. There were concerns that service users might lack the skills, resources and information required to manage their IECR.

Conclusions:

An IECR has the potential to fill the gaps in an increasingly complex and fragmented mental health system but risks entrenching service users' experiences of stigma and discrimination unless they are meaningfully involved in their IECR. Ensuring that service users have meaningful involvement in their IECR and the resources to be involved in decisions about their IECR will be critical to managing the risks posed by an IECR.