How is information kept confidential?
The Sax Institute, as the manager of the 45 and Up Study, adheres to Commonwealth and State privacy legislation: Privacy Act 1988 (Cth); Health Records and Information Privacy Act 2002 (NSW); and the NSW Health Privacy Manual for Health Information.
All information collected and held for the Study is kept strictly confidential and is only used for health services research, planning and to improve treatment.
Information held is not released in any way that identifies an individual or household. Personally identified information that the Study receives will only be released with your consent or as required by law. All information we collect is stored, analysed and reported on with all individual identifying details removed. This ensures we maintain total security, confidentiality and anonymity of the Study participants.
The 45 and Up Study is also overseen by the University of NSW Human Research Ethics Committee to ensure all requirements for ethical conduct and information security, confidentiality and privacy are met.
Who can access 45 and Up Study information and how?
To access any 45 and Up Study information, all research proposals undergo a rigorous approval process. The research must be credible and of value and researchers must also seek approval from an independent ethics committee for their proposal.
Once these requirements are met, the researcher can access Study information for the duration of their project through our secure data analysis facility.
Anyone working on the Study, including researchers accessing the data, sign a confidentiality agreement and follow strict policies and procedures to ensure the data and information are protected.
What type of health information does the 45 and Up Study link to?
Research questions often need to be answered using several different sources of information. Information from 45 and Up Study questionnaires is linked to health and other information that is already routinely collected. This includes information on your current and past health treatments and procedures, and health services you use. As the linkage is ongoing, over time this will include treatments, procedures and services you use in the future. Linking a variety of information sources allows researchers to better understand the factors influencing health and the health needs of the community.
If this information contains any details that could identify you, these details are removed before information is given to researchers. You can read about the 45 and Up Study research underway or call the Infoline on 1300 45 11 45 for more information.
Further information on the health and other records that may be used in the 45 and Up Study is available here.
I haven’t heard from you in a long time. Am I still in the Study?
There are several possible reasons for not receiving a questionnaire or other contact. For example, if you have moved recently we may have incorrect address information in our database, or you may have previously requested that we exclude you from personal contact or asked to withdraw from the 45 and Up Study.
If you have requested contact by email, our messages may be going to your “junk” folder or your email address may not be up to date.
Please get in touch and we can confirm your participation status and contact information.
I didn’t join originally but it sounds really important. Can I still enrol?
Thank you for your interest in participating. We are not currently accepting new enrolments for the 45 and Up Study; however we may do so in the future.