Privacy and ethics
The Centre for Health Research Illawarra Shoalhaven Population (CHRISP) operate the Illawarra Health Information Platform (IHIP), an ethically approved research databank and health records linkage system. The research databank and linkage protocol were approved by the shared University of Wollongong (UOW) and Illawarra Shoalhaven Local Health District (ISLHD) Health and Medical Human Research Ethics Committee (HREC). IHIP's research databank was ethically approved on the basis that it is non-identifiable. This means that individual identifiers are not held in the IHIP research databank, which protects the privacy of individuals.
A formal governance process has been established to approve research which uses IHIP data. This process, described in the CHRISP Data Policy, ensures that research using IHIP complies with relevant ethical and privacy guidelines and legislation. This includes Commonwealth privacy legislation, NSW privacy and health administration regulations, NSW Health policy directives and guidelines, NSW Information and Privacy Commission statutory guidelines, Aboriginal Health and Medical Research Council guidelines, National Health and Medical Research Council guidelines, ISLHD policy directives and guidelines and University of Wollongong research policies.
Research projects which use IHIP data require approval from an ethics committee unless the CHRISP Executive Steering Committee determines that the project can be exempted from ethical review. The criteria for consideration for exemption are:
- The project must be negligible risk and involve only the use of routinely collected non-identifiable data already held in IHIP (in accordance with the National Statement on Ethical Research 5.1.22-23)
- The project does not involve data linkage or the use of linked datasets, in accordance with 8.1(iii) NSW Health Policy Directive Data Collections - Disclosure of Unit Record Data for Research of Management of Health Services, 2015
- The project is not subject to specific legislative or ethical conditions (for example, research regarding Aboriginal communities), also in accordance with 8.1(iii)
All data custodian and/or ethics approvals are submitted to the CHRISP Executive Steering Committee for approval before release of a research dataset.