FAQ’s about ANZDATA & Consumer Engagement
Your hospital gives ANZDATA your name, postcode, date of birth, gender, ethnic background (your race), some information about your health conditions, and information about the type and outcome of the kidney treatment you are receiving (dialysis or transplant). This information is collected when you start dialysis or have a transplant, and then every year. We DO NOT collect personal details about your address, telephone number, Medicare number, medical insurance, or non-medical matters such as occupation or income.
There is a lot of security in place to protect your information. ANZDATA follows Australian and New Zealand Government rules about keeping your information private and confidential. There are many security measures to make sure all the information is kept securely. The computer systems are protected. Information is transferred in a safe and secure way.
You can ask to see your own information at any time or get copies of the reports that ANZDATA make. If you have any questions or concerns about giving your information to ANZDATA at any stage, you can talk to your kidney doctor. You can also contact ANZDATA by phone (+61 8 8128 4758) or by email anzdata@anzdata.org.au
You can contact one of Consumer Engagement Officers who can tell you more about the different ways you can engage with the Registry. This could be as little as being a part of a discussion group on Registry operations and outputs from a consumers perspective; or you could be a part of a group that advisors the Registry and Researchers on research questions or quality indicators that may impact patients and consumers with kidney disease or on kidney treatment. You can even take part in research and be apart of the process from its inception to analysis and final publication.
If you have an interest at any stage, you can talk with us by phone or email your enquiry to community@anzdata.org.au.
