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

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.