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The Department of Health’s governance of data, including linkage keys, is consistent with the collection, access and disclosure requirements embodied in a variety of legislation, policy frameworks and regulations. |
The Director General of the Department of Health delegates these data responsibilities to data stewards, who are assisted by data custodians, noting that the latter are unparalleled subject-matter experts in the collection, management and interpretation of health data. |
All data release must be authorised in line with the Director General approved policies. |
Where personal health data is used for research, it requires ethical approval from the Department of Health’s NHMRC accredited HREC and research governance approval via the Research Development Unit. |
Use of DLB products and services, including linkage keys, requires authorisation. Data custodians and DLB are jointly responsible for ensuring linked data requests are technically and logically feasible, which at times includes escalation to the relevant data steward(s). |
DLB coordinates this activity using a streamlined application review process [20] that includes a preliminary assessment of an application’s feasibility and the provision of expert advice. DLB will typically also coordinate the draft application review process on behalf of non-Department of Health data custodians. |
DLB’s application process is independent from the HREC, but assists applicants with their preparation to submit their ethics application. Feedback from the HREC indicates that requests for linked data are better prepared coming via DLB’s application process than other avenues. |
Importantly, the Department of Health respects that non-Department of Health data custodians have their own independent processes that the Department of Health has no authority to change, prescribe, override, or hasten. |
Differences in policies and legislation between jurisdictions must be considered when national or cross-jurisdictional linkages are featured. |