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

Abstract

Objectives: To review the use of data linkage by Australian state and territory communicable disease control units, and to identify barriers to and enablers of data linkage to inform communicable disease surveillance and control activities. Methods: Semi‐structured telephone interviews were carried out with one key informant from communicable disease control units in all eight Australian states and territories between October 2017 and January 2018. Results: Key informants from all Australian states and territories participated in the interview. A variety of existing practices were identified, with few jurisdictions making systematic use of available data linkage infrastructure. Key barriers identified from the review included: a lack of perceived need; system factors; and resources. Existing regulatory tools enable data linkage to enhance communicable disease surveillance and control. Conclusions: We identified considerable variation in the use of data linkage to inform communicable disease surveillance and control activities between jurisdictions. We suggest that routinely collected, disparate data are systematically integrated into existing surveillance and response policy cycle to improve communicable disease prevention and control efforts. Implications for public health: Existing gaps in communicable disease surveillance data may affect prevention and control efforts. Data linkage is recognised as a valuable method to close surveillance gaps and should be used to enhance the value of publicly held health data.

Challenges and opportunities for using population health data to investigate cancer survivors’ quality of life in Australia

“…Compared with practices for data sharing in the Netherlands, linkage and integration of datasets is inadequate in Australia, where barriers to accessing and linking data sources for research purposes have been well documented [16,[32][33][34][35]. For a combination of legal, technical, and institutional reasons, Australia has historically used health information poorly compared with other developed countries [36].…”

“…Researchers are therefore required to obtain multiple approvals including from data linkage centres, data custodians, and ethics committees [ 32 ]. Due to the complexity, duplication, and lack of cohesion of the procedures required to undertake data linkage, it remains a time consuming, costly, and resource-intensive process, particularly linkage of cross-jurisdictional datasets [ 32 , 35 ]. For a national study, obtaining required approvals can require liaison with numerous data custodians, up to seven data linkage centres, and more than 10 ethics committees [ 32 ], with expected timelines exceeding three years [ 16 ].…”

Usefulness of linked data for infectious disease events: a systematic review

“…Data linkage infrastructure has been established in many jurisdictions, and in some cases the addition of infectious disease data to these linked data sets [ 12 , 13 ]. This provides a unique opportunity to use linked data for both surveillance of and response to infectious disease events.…”