Kidney transplantation is a complex speciality where care pathways involve multi-speciality coordination and administration of clinical data across organisational boundaries. This PhD aimed to better understand clinical processes and workflows, data management challenges and the role of health information technology (IT) to support kidney transplant services. The first manuscript in this thesis is a systematic review of the existing evidence on the use of health IT in kidney transplantation. I identified studies that demonstrated that technology has been implemented to manage clinical data, improve efficiency and allow patient-led care. However, there was an overall scarcity of robust evidence on effectiveness in this field, as studies were largely descriptive and did not provide quantifiable evidence of intended benefits. This highlighted a need for further scientific research to better understand workflows, clinical requirements and service needs. In the second manuscript I presented a data journey model of the kidney transplant network in the North West of England. Applying the data journey modelling methodology allowed me to gain an in-depth understanding of the health IT infrastructure pertinent to kidney transplant workflows as well as highlight potential socio-technical barriers to digital transformation. I identified that human actors, rather than IT systems formed the central focus of data movement. The lack of interoperability within the IT landscape impacted the workflow and exerted a significant administrative burden on clinical teams. Based on this study, I suggested that future solutions must consider regional interoperability and transplant-specific views of data to support the service. I subsequently conducted a national interview study evaluating the current state of digital transformation of kidney transplant services across the United Kingdom. The results of this study are reported in the third manuscript. Analysis revealed that the key challenge revolved around an inability to access clinical data across organisational boundaries. This resulted in dependence on post or e-mail to transfer clinical data, such as blood results or medication lists. Though most centres had hospital-wide electronic health records, these were unable to support workflow requirements. This was primarily because implemented systems were unable to provide a single unified view of transplant-related data. As a result, transplant coordinators reported several manual workarounds to manage clinical data, such as paper folders, MicrosoftÂ© Excel sheets and scanned files on hospital shared drives. In the fourth manuscript I presented a prototype user interface of a conceptual solution based on the needs and requirements gathered through the preceding chapters of this thesis. I applied a user-centred codesign methodology to receive continuous input from clinical stakeholders during the design process. Together with the digital health software team, I used the NHS design toolkit as well as international web accessibility standards to design a user interface that met clinical workflow requirements, but also adhered to best practice. I aimed to demonstrate that rapid prototyping and real-world feedback adds significant value in the development of clinical IT solutions. Reflecting on the results from the first four manuscripts, I recognised a need for standardised data models to drive the development of interoperable health IT systems. To realise this, I explored the openEHR approach in the final manuscript and created an open information model for living kidney donor assessment. This created the potential of standardisation at the level of data storage and achieve semantic interoperability allowing the future development of transplant-specific clinical applications.
- health information interoperability
- health data standards
- medical informatics
- kidney transplantation
- user-centred design