Optimising the use of linked administrative data for infectious diseases research in Australia

Abstract

Infectious diseases remain a major cause of morbidity in Australia. A wealth of data exists in administrative datasets, which are linked through established data-linkage infrastructure in most Australian states and territories. These linkages can support robust studies to investigate the burden of disease, the relative contribution of various aetiological agents to disease, and the effectiveness of population-based prevention policies -research that is critical to the success of current and future vaccination programs.At a recent symposium in Perth, epidemiologists, clinicians and policy makers in the infectious diseases field discussed the various benefits of, and barriers to, data-linkage research, with a focus on respiratory infection research. A number of issues and recommendations emerged. The demand for datalinkage projects is starting to outweigh the capabilities of exisiting datalinkage infrastructure. There is a need to further streamline processes relating to data access, increase data sharing and conduct nationally collaborative projects. Concerns about data security and sharing across jurisdictional borders can be addressed through multiple safe data solutions.Researchers need to do more to ensure that the benefits of linking datasets to answer policy-relevant questions are being realised for the benefit of community groups, government authorities, funding bodies and policy makers. Increased collaboration and engagement across all sectors can optimise the use of linked data to help reduce the burden of infectious diseases.

Use of data linkage to improve communicable disease surveillance and control in Australia: existing practices, barriers and enablers

“…Barriers associated with cross‐jurisdictional linkage identified by others include issues with timely data access, project governance and administration, as well as data security, privacy, infrastructure and capability 10,14,48–50 . We identified additional barriers including a lack of perceived need, system factors and resources.…”

“…Barriers associated with cross-jurisdictional linkage identified by others include issues with timely data access, project governance and administration, as well as data security, privacy, infrastructure and capability. 10,14,[48][49][50] We identified additional barriers including a lack of perceived need, system factors and resources. Jurisdictions with small populations reported regularly using unlinked disparate data to fill surveillance gaps, which precluded a need for data linkage methodologies to be used for data cleansing purposes.…”

“…10,11,13 In the communicable diseases setting, data linkage can be used to evaluate public health interventions and guide policy development. 14 In Australia, data linkage methodologies have been used to quantify case ascertainment in communicable disease registers; 15 to improve estimates of selected communicable diseases; [16][17][18][19] to better describe the burden of selected communicable diseases among Aboriginal and Torres Strait Islander people; [3][4][5]20 to improve communicable disease morbidity and mortality estimates; [21][22][23] and to evaluate immunisation programs. [24][25][26][27] These are all important examples of how data linkage can be applied to support communicable disease research in Australia, and results from these studies are often used to inform policy making and program improvement.…”

“…Most data linkage studies in Australia are conducted in New South Wales (NSW) and Western Australia (WA), where linkage infrastructure is well developed and utilised 10,11,13 . In the communicable diseases setting, data linkage can be used to evaluate public health interventions and guide policy development 14 . In Australia, data linkage methodologies have been used to quantify case ascertainment in communicable disease registers; 15 to improve estimates of selected communicable diseases; 16–19 to better describe the burden of selected communicable diseases among Aboriginal and Torres Strait Islander people; 3–5,20 to improve communicable disease morbidity and mortality estimates; 21–23 and to evaluate immunisation programs 24–27 .…”

“…In Australia, data linkage methodologies have been used to quantify case ascertainment in communicable disease registers; 15 to improve estimates of selected communicable diseases; 16–19 to better describe the burden of selected communicable diseases among Aboriginal and Torres Strait Islander people; 3–5,20 to improve communicable disease morbidity and mortality estimates; 21–23 and to evaluate immunisation programs 24–27 . These are all important examples of how data linkage can be applied to support communicable disease research in Australia, and results from these studies are often used to inform policy making and program improvement 14 . However, there is comparatively little use of data linkage by jurisdictional health departments to support communicable disease surveillance and control activities in an ongoing manner or to systematically address underlying gaps in communicable disease data collections.…”