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Data

Data custodianship approval

For data to leave the district, the SESLHD Data custodian must provide approval. Please find the template within “forms and templates” on the SESLHD research website and note the below process chart. The data custodian approval request must be made within the SSA submission. Please ensure you have concisely completed the request form before submitting within the SSA. If incomplete this will cause delays in processing.

BEFORE completing the template – please consider the status of the data that is intended to leave the LHD. Please ensure you have clarified the status:

Unidentifiable (individual identifiers have been permanently removed and by no means of which specific individual can be identified)

Re-identifiable (All identifiers are removed from the dataset e.g. name, postcode, date of birth), replaced with a code, or are aggregated. Re-identification may be possible if a master copy of data that contains identifiers or master copy of study participants is kept. Please ensure you are clearly identifying who is going to access the master copy and what measures will be taken to ensure its secure storage.

Identifiable The identity of an individual information, or other sensitive information, can be reasonably discerned. Please ensure that the risk and potential considerations such as sensitivity of the information is declared within the request

Please note: failure to provide sufficient detail will render the process longer by requesting further information.

Data must not be stored on personal laptops or external hard drives/USBs. Please only store study data on secure hospital servers or internal non-mobile hospital computers. If data transfer is required, encryption and a suitably secure service must be used.

Specific approval is required to take any individual level patient data off hospital premises, and data must be rendered non-identifiable where possible.

REDCap (Research Electronic Data Capture) is a secure, web-based data capture and data management software tool designed for research purposes. REDCap is the SESLHD HREC's preferred data management software.

For SESLHD researchers, REDCap can be accessed via https://redcap.sesi.health.nsw.gov.au/ or by contacting SESLHD-REDCap-admin@health.nsw.gov.au. Data collected by REDCap is stored on SESLHD servers and has undergone security testing.