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Does Legislation Impede Data Sharing in Australia Across Institutions and Jurisdictions? A Scoping Review

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Abstract

In Australia, regulations governing data, including formal legislation and policies promulgated by private and public agencies, are often seen as a barrier to data sharing. This sharing can include between institutions, as well as across jurisdictional borders in a federated jurisdiction such as Australia. In some cases, these regulations place a barrier to sharing data across borders or between institutions without a prerequisite requirement. In other cases, these regulations may be perceived as a justification not to share data. The objective of this review was to analyse published literature from Australia to see what regulations were used to justify not sharing data, along with any other factors that might discourage data sharing. We searched PubMed, Scopus and Web of Science for empirical and policy articles discussing data sharing in Australia. We then filtered these results via abstract and conducted a full text assessment to include 33 articles for analysis. Although there are a few areas of notable regulatory divergence with respect to legislation governing health data, most regulations in Australia are relatively consistent. Further, the absence of uniform ethics approval between sites in different states was frequently cited as a barrier to data sharing.

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Availability of data and materials

All materials used to complete the scoping review are available from author Scheibner upon request.

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Funding

The authors acknowledge support from the Australian Centre for Health Law Research (ACHLR) and the Centre for Healthcare Transformation (CHT), Queensland University of Technology, for seed funding for this project under the ACHLR-CHT collaborative grant scheme. Author Scheibner also wishes to acknowledge support from the Flinders University College of Business, Government and Law under the Establishment Grant scheme.

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Authors and Affiliations

  1. College of Business, Government and Law, Flinders University, Adelaide, Australia

    James Scheibner

  2. Australian Centre for Health Law Research (ACHLR), School of Law, Faculty of Business and Law, Queensland University of Technology, Brisbane, Australia

    Nicole Kroesche, Luke Wakefield & Tina Cockburn

  3. Australian Centre for Health Services Innovation (AusHSI) and Centre for Healthcare Transformation, School of Public Health and Social Work, Queensland University of Technology, Brisbane, Australia

    Steven M. McPhail

  4. Digital Health and Informatics Directorate, Metro South Health, Brisbane, Australia

    Steven M. McPhail

  5. Associate Professor of Ethics and Professionalism, Medical School, Academy for Medical Education, University of Queensland, Brisbane, Australia

    Bernadette Richards

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  4. Tina Cockburn
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Contributions

All authors contributed to drafting the research question, developing themes, and editing the manuscript. The literature search, study selection and data extraction were completed by authors Wakefield and Kroesche, who were supported by authors Scheibner, Cockburn and Richards. The first draft of the methodology was written by author Scheibner, and authors Cockburn, Richards, Kroesche and Wakefield worked closely on subsequent version of the manuscript. Author McPhail reviewed and provided comments on a draft version of the manuscript. All authors approved the final version.

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Correspondence to James Scheibner.

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Scheibner, J., Kroesche, N., Wakefield, L. et al. Does Legislation Impede Data Sharing in Australia Across Institutions and Jurisdictions? A Scoping Review. J Med Syst 47, 116 (2023). https://doi.org/10.1007/s10916-023-02009-z

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