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Challenges in Clinical Data Linkage in Australia: Perspective of Spinal Cord Injury

Challenges in Clinical Data Linkage in Australia: Perspective of Spinal Cord Injury

Jane Dominique Moon, Megan Bohensky, Mary Galea
Copyright: © 2016 |Volume: 1 |Issue: 1 |Pages: 12
ISSN: 2379-738X|EISSN: 2379-7371|EISBN13: 9781466694149|DOI: 10.4018/IJBDAH.2016010102
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MLA

Moon, Jane Dominique, et al. "Challenges in Clinical Data Linkage in Australia: Perspective of Spinal Cord Injury." IJBDAH vol.1, no.1 2016: pp.18-29. http://doi.org/10.4018/IJBDAH.2016010102

APA

Moon, J. D., Bohensky, M., & Galea, M. (2016). Challenges in Clinical Data Linkage in Australia: Perspective of Spinal Cord Injury. International Journal of Big Data and Analytics in Healthcare (IJBDAH), 1(1), 18-29. http://doi.org/10.4018/IJBDAH.2016010102

Chicago

Moon, Jane Dominique, Megan Bohensky, and Mary Galea. "Challenges in Clinical Data Linkage in Australia: Perspective of Spinal Cord Injury," International Journal of Big Data and Analytics in Healthcare (IJBDAH) 1, no.1: 18-29. http://doi.org/10.4018/IJBDAH.2016010102

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Abstract

Long term and comprehensive management of patients with Spinal Cord Injury (SCI) within the Australian health system suffers from ineffective patient data co-ordination between state and federal levels, between private and public hospitals, and among the allied health sectors, all of which form multiple data custodians. Patients with SCI may require medical intervention over an average of 30-40 years thus it is challenging to keep all the information that belongs to the same person accessible over a prolonged period of time. Although Australia is leading in the data linkage program (e.g. the West Australian Data Linkage Systems, WADLS), it has a long way to go as far as SCI patients are concerned. Here, the authors present findings based on interviews with a range of data custodians for patients with SCI, showing 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 paper presents information generated by SCI patients and considers the range of data custodians and issues involved in data linkage in Australia, as well as reviewing the WADLS and a new Australian Government initiative called My Health Record system.

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