High-quality research underpinned by a strong governance and ethics system
The 45 and Up Study is managed by the Sax Institute in collaboration with major partner Cancer Council NSW and the Heart Foundation and the NSW Ministry of Health.
The Institute’s 45 and Up Study coordinating centre manages the Study and is responsible through the Division Head, Research Assets, and the CEO to the Sax Institute’s Board, which has ultimate responsibility for the Study’s governance.
University of NSW Human Research Ethics Committee
This Committee has ethical oversight of conduct of the Study and the use of its research assets. All changes to new uses of the Study with potential implications for Study participants require the Committee’s approval. The Sax Institute also reports annually to the Committee on its conduct of the Study. These requirements ensure that all research use of Study assets is in accordance with the Australian National Statement on Ethical Conduct in Human Research.
Other ethics committees
The Study also has in principle permission for data linkage from the Human Research Ethics Committees of the following organisations:
- Australian Government Department of Health and Ageing
- Australian Institute of Health and Welfare
- Australian Government Department of Veterans’ Affairs
- Sydney Local Health District
- South Western Sydney Local Health District
- NSW Health
- NSW Population & Health Services Research Ethics Committee
Individual projects using linked data require separate approval from the relevant ethics committees and data custodians.
The following policies also set a governance framework for the Study:
The 45 and Up Study is bound by Commonwealth and State privacy legislation, including the Health Records and Information Privacy Act 2002 (NSW) and the NSW Health Privacy Manual. All information collected is treated with absolute confidentiality and used for health research only.
No information will be released in a way that would enable an individual or household to be identified, unless required by law. Information gathered will be stored, analysed and reported on with all individual identifying details removed to ensure total security, confidentiality and anonymity.
The independent committees outlined above play an important role in ensuring participant confidentiality.
Accessing the data
Researchers have no direct access to information collected from our questionnaires. To access Study information, they must comply with a rigorous approvals process and once their research is finished they must destroy their copy of the data.
All staff and researchers working on the Study sign confidentiality agreements and follow strict protocols and procedures to ensure the data and information are protected. The data is located in a security building where access is restricted to 45 and Up Study staff.