JMIR Publications

ABSTRACT

Background:

Data journey modelling is a methodology used to establish a high-level overview of information technology (IT) infrastructure in healthcare systems. It allows a better understanding of socio-technical barriers and thus informs meaningful digital transformation. Kidney transplantation is a complex clinical service involving multiple specialists and. The referral pathway for a transplant requires the centralisation of patient data across multiple IT solutions and healthcare organisations. At present, there is a poor understanding of the role of IT in this process, specifically around the management of patient data, clinical communication and workflow support.

Objective:

To apply data journey modelling to better understand interoperability, data access and workflow requirements of a regional multi-centre kidney transplant service.

Methods:

An incremental methodology was used to develop the data journey model. This included review of service documents, domain expert interviews and iterative modelling sessions. Results were analysed based on the LOAD (landscape, organisations, actors and data) framework to provide a meaningful assessment of current data management challenges and inform the role for IT to overcome these.

Results:

Results were presented as a diagram of the organisations (n=4), IT systems (n>9), actors (n>4) and data journeys (n=0) involved in the transplant referral pathway. The diagram revealed that all movement of data was dependent on actor interaction with IT systems and manual transcription of data on to Microsoft© Word documents. Each actor had between two and five interactions with IT systems to capture all relevant data, which was reported to be time-consuming and error-prone. There was no interoperability within and across organisations, which led to delays as clinical teams manually transferred data such as medical history and test results via post or email.

Conclusions:

Overall, data journey modelling demonstrated that human actors, rather than IT systems formed the central focus of data movement. The IT landscape did not complement the workflow and exerted a significant administrative burden on clinical teams. Based on this study, future solutions must consider regional interoperability and speciality-specific views of data to support multi-organisational clinical services, such as transplantation.