Data

Data custodian approval

For unit record data to leave the district, the SESLHD Data custodian must provide approval in accordance with NSW Health Policy. For research involving disclosure of unit record data please complete the Data Custodian Request available on the Forms and Templates page and note the accompanying process chart. 

The data custodian approval request must be uploaded with your SSA submission. Please ensure you have concisely completed the request form and that the information aligns with the study protocol, before submitting within the SSA. Incomplete forms 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 this in your request.

Key definitions

Unit record data - For the purpose of this policy directive ‘unit record data’ are electronic records of information that relate to the health of an individual, which are held by Local Health Districts.

De-identified data - a person’s identity is no longer apparent or cannot be reasonably ascertained from the information or data. De-identified information is information from which the identifiers about the person have been permanently removed, or where the identifiers have never been included.

Re-identifiable data – data that can be linked back to a person by some means. I.e. coding data by replacing personal information (name, DOB, postcode) with a participant ID and then retaining a master list linking the code to identifiers. Coded information will remain potentially re-identifiable to a person or body with the means to link the code back to other identifying details. Other examples of re-identification can be found here.  

For re-identifiable data, requests should make clear who will have access to the master code list and what measure are in place to ensure secure storage, with separation from research data.

Identifiable - Personal Information or Personal Health Information, see policy definitions here. The identity of an individual, or other sensitive information, can be reasonably discerned.

Please ensure considerations of potential risks such as sensitivity of the information is declared within the request.

Sources:

Information Privacy Commission NSW https://www.ipc.nsw.gov.au/fact-sheet-de-identification-personal-information

PD2018_001 - Disclosure of unit record data by Local Health Districts for research or contractor services

Please note: failure to provide sufficient detail or incomplete forms will cause delays in processing.

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.

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.