Health data linkage research in Australia remains challenging

Abstract

Data linkage is a valuable technique for uniting information from multiple sources that relates to the same person, place, family or event. Despite its value, establishing such linkages in Australia remains challenging. Existing policies are a missed opportunity for research and innovation and engender a negative attitude among researchers when considering data linkage as a research means. Greater leadership from the Population Health Research Network and cooperation from data custodians and Human Research Ethics Committees are necessary to access optimally Australia’s enormous data potential.

Access to linked data: challenges and progress

“…The paper by Palamuthusingam et al . describes the challenges faced by researchers wishing to access Australian linked data . We agree with several points they make.…”

The SPOR-Canadian Data Platform: a national initiative to facilitate data rich multi-jurisdictional research

“…One approach to health research that has contributed significantly to health improvements over the past 30 years focuses on the use of population-level data routinely collected when individuals interact with the health system, which contain individual-level information on healthcare services use (e.g., hospitalizations, prescription drug dispensations) and demographics [3,4]. Using these data for multi-jurisdictional research, defined as research that accesses data from more than one jurisdiction, can overcome some of the limitations of single jurisdiction studies (e.g., studying rare conditions, or comparing health care system outcomes), but it does not come without challenges [5][6][7][8]. Addressing the challenges is acknowledged as a necessary step towards facilitating this type of research as various countries are developing the infrastructure to overcome them [7][8][9][10][11].…”

Author reply

“…Finally, we do not dispute that human research ethics committee (HREC) approval is essential when undertaking data‐linkage projects and we advocate that all researchers undertaking data‐linkage seek ethics approval for the reasons outlined in our narrative . Our intention was to highlight the inconsistency between different jurisdictions' review processes, whereby custodian consultation could only occur after HREC approval running the risk that custodians modify research requests resulting in HREC amendments that would have been avoided had the custodian consultation occurred earlier in the process.…”

“…Health data linkage in Australia remains challenging as reflected in our recent experience of multi‐jurisdictional data linkage. We welcome the Population Health Research Network (PHRN) collaborative's initiatives in establishing a streamlined and unified application process in multi‐jurisdictional data linkage projects, and we fully support their vision.…”