'Does Legislation Impede Data Sharing in Australia Across Institutions and Jurisdictions? A Scoping Review' by James Scheibner, Nicole Kroesche, Luke Wakefield, Tina Cockburn, Steven M. McPhail and Bernadette Richards in (2023) 47 Journal of Medical Systems Review comments
Healthcare providers and organisations, researchers and government agencies increasingly call for seamless access to, and transfer of, health and social welfare data across institutions and jurisdictions. Different healthcare providers request access to patient data, records, and information from other institutions to facilitate continuity of care and in seeking to reduce the risk of clinical errors. Likewise, patient healthcare information in aggregate form represents an increasingly powerful tool to promote collaborative health-related research by universities and research institutions. Finally, data can help guide quality improvement, policy development and resource allocation by government agencies such as public health departments. These use cases will be described as ‘data sharing’ throughout this paper. Whilst these use cases might play different roles in the healthcare system, they have the potential to promote public safety and improve clinical outcomes.
Despite the potential for health and social welfare data sharing to improve the safety and quality of healthcare and facilitate research, it remains relatively uncommon in Australia. Although technical incompatibility and public concerns over data sharing are important considerations, one commonly cited reason not to share data is regulatory burden. Regulation, ranging from formal legislation to institutional policies and guidelines for conduct, supplies the privacy and research ethics principles concerning the use and sharing of health and social welfare data. Further, different regulation protects individuals with respect to how their data is used. This dual function has led healthcare providers and organisations, government agencies and researchers to frequently argue that in seeking to provide a protective framework, the regulation serves to prohibit data sharing. In addition, stakeholders such as researchers and healthcare providers often perceive this regulation as creating a significant barrier to data sharing across jurisdictions. Regulatory divergence is more complicated in a federal nation such as Australia, where the Federal and state governments have overlapping jurisdiction. Specifically, Federal privacy laws govern the processing of personal information by private entities as well as Commonwealth government agencies. By contrast, state agencies (such as public hospitals) are regulated under state privacy, health information and public sector laws. This somewhat diverse regulatory landscape can complicate effective sharing of data, but the challenge is not limited to clearly identified regulatory barriers. A careful review of the discourse surrounding the sharing of health and social welfare data reveals that the extent to which the identified restrictions on data sharing are actual, perceived, or self-imposed remains unclear. Although published literature has so far focused on legal analyses of privacy legislation and other forms of regulation, it can also assist in the characterisation of regulatory barriers to data sharing as either perceived, real or self-imposed. This understanding can, in turn, facilitate meaningful engagement with the challenges facing those who wish to share data for valid research and healthcare delivery-related purposes and inform law and policy reform.
This paper presents a scoping review of the academic literature on cross-institutional and jurisdictional sharing of medical and social welfare data in Australia published between January 2011 and December 2021. To provide a meaningful review of the literature, a broad approach was adopted. Both empirical studies where data sharing supports the research method, and policy studies that consider the impact of data sharing regulations were included. This approach was adopted with a view to assessing whether perspectives on data sharing regulation diverge between scientific researchers and policy scholars. We then deductively coded these studies according to methods used in each study, as well as stakeholders, jurisdictions and regulatory tools mentioned. In addition, we deductively and inductively coded each of these articles to identify the specific challenges associated with data sharing. We also categorised articles depending on whether they considered data sharing at the institutional or inter-jurisdictional level. We concluded by examining the extent to which reported issues with data sharing are consistent with how data sharing legislation operates between different jurisdictions in Australia. The results from this study will help assess whether current regulations prohibit data sharing or other factors play a more significant role in prohibiting data sharing across Australia.
