Clinical Data Linkages in Spinal Cord Injuries (SCI) in Australia

Abstract

Clinical data linkage amongst patients with Spinal Cord Injury (SCI) is a challenge, as the Australian Health System is fragmented and there is lack of coordination between multiple data custodians at the state and federal levels, private and public hospitals, and acute and allied health sectors. This is particularly problematic in chronic conditions such as SCI, where multiple data custodians collect data on patients over long periods of time. The author presents findings based on interviews with a range of data custodians for SCI categorized as clinical, statutory, and financial data custodians. It is found that data are kept in different silos, which are not coordinated, hence duplication exists and patient information that exists on many different databases is inconsistently updated. This chapter describes the importance of Clinical Data Linkage for healthcare in predicting disease trajectories for SCI and discusses how administrative and clinical data are collected and stored and some of the challenges in linking these datasets.