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.

Clinical Data Linkages in Spinal Cord Injuries (SCI) in Australia: What Are the Concerns?

Spinal Cord Injury (SCI) is a traumatic condition where there is a high dependency on medical and social support (ABS, 2013). The average life span after injury is around 40 years and the latest review suggests there has been a significant increase in incidences in the age group over 40 years (AIHW, 2010) . Patients with spinal cord injury have long term treatments and rely heavily on medical and social intervention. Evidence suggests that SCI patients constantly return to hospital for treatment for conditions such urinary tract infections, pneumonia and a range of other conditions (Guilcher et al., 2013; VNI, 2011). The study suggests that a third of traumatic SCI will be hospitalized each year posing a big burden on health expenditure as well as on quality of life (Jaglal et al., 2009). Over the years of medical treatment, patients accumulate a large set of medical data at a public (Commonwealth, State and Community) and private level. This distributed data are difficult to identify and key information may not be available to clinicians or to patients at the right time and place as clinical data are kept at different databases (Banfield et al., 2013; Pang & Hansen, 2006). The aim of this current research is to develop a basis for a systematic approach to working with a mass of health information that is currently not mobilized effectively. This research proposes to investigate the life cycle of information generated from SCI and how it can be linked and integrated to collate and make sense of the data relevant to these incidents to see if it can be used predictively to preempt problems and ultimately improve outcomes for patients with SCI. The focus of this study will be on trauma centres of SCI in Victoria, following through health information generated by patients of SCI from the first injury to discharge. Identifying stake holders, roles they play and the needs of technology to evolve to share information by all concerned (Pinsonneault, Dakshinamoorthy, Reidel, & Tamblyn, 2012; Pluye et al., 2013).

Jane Moon

Papers

An E-Journey through the Life Cycle of Spinal Cord Injury