Privacy Aspects of ANZDATA Collection

There are two PDF documents available:

Notes to Contributing Units and Physicians.

Important Privacy Information and Individual Consent Form.

The contents of these two documents are shown below.

Notice to contributing Units and Physicians

Privacy aspects of ANZDATA collection

You will be aware of recent changes to collection and management of health information in Australia. The Commonwealth Government has enacted amendments to the Privacy Act, which have extended the coverage of that Act to the non-government sector. In addition, State and Territory governments are in the process of implementing similar reforms.

The situation of ANZDATA is somewhat unclear. We are funded under a formal agreement with the Commonwealth Department of Health and Ageing which mandates collection of the data. A literal reading of the Privacy Act suggests that we may be exempt from the Act and do not need to gain consent for information which we are required under Commonwealth contract to collect. However, the contribution of other non-government bodies such as the Australian Kidney Foundation (AKF) to the income of the Registry, and the private status of many of our contributors raise questions as to our status under the Act. Many contributors are subject to the new, non-government National Privacy Principles (NPP’s) as outlined in the Act or the State / Territory equivalents. In view of this situation, and to ensure we meet and exceed expectations, we have chosen to meet the new private sector requirements.

The thrust of these requirements is threefold
• make all patients aware that personal data is being collected
• obtain consent to collect the data
• allow patients to view (and request alteration) to their data records.

The Privacy Commission specifically addresses the issue of consent as it applies to disease registries in their "Guidelines on Privacy in the Private Health Sector" (Office of the Federal Privacy Commissions, Canberra, 2001, available from http://www.privacy.gov.au/publications/hg_01.html#a53 ):

"Where consent is required from individuals for the collection and use of data for public health purposes, such as in relation to the establishment and maintenance of a disease register, it may sometimes be appropriate to take the approach of giving individuals the opportunity to opt out of being included on the register." (Section A.5.3)

Thus, from the point of view of obtaining consent to collect information regarding their treatment with dialysis and transplantation, we would advise that this section of the guidelines be followed for your patients. We have sought advice from the Office of the Privacy Commissioner regarding the acceptability of this approach, but are yet to receive a reply. We have also asked for a comment from the Human Research Ethics Committee of The Queen Elizabeth Hospital regarding the privacy information document. However, the urgency of obtaining information for this census period dictates that we proceed along these lines. It is clear that we are fulfilling the requirements of the Act by this approach.

The enclosed information sheet has been developed to facilitate this process. We ask that you provide this to all dialysis and transplant patients for whom you will be providing information to the Registry. Where questions arise, we are very happy to speak with you or patients directly to clarify issues. This step is important; it has been our experience that, once the purposes of ANZDATA are explained and the data safeguards are indicated, very few people object to the data collection. Nevertheless, the provision of the enclosed information is an important step in meeting current community standards.

If there are any concerns or questions, which arise from this, please contact us at the earliest opportunity.

Graeme Russ Stephen McDonald

Monday, 22 July 2002

Important Privacy Information

As part of routine medical care of people receiving treatment with dialysis or kidney transplantation, your kidney specialist collects certain information about the patients they treat. All kidney specialists throughout Australia and New Zealand report this information every 6 months to the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA). ANZDATA collects the information for the purpose of monitoring treatments and performing analyses to improve quality of care for people with kidney failure.

1. What is ANZDATA ?

ANZDATA is an organization set up by the Australian Kidney Foundation and the Australia and New Zealand Society of Nephrology to monitor dialysis and transplant treatments. ANZDATA is funded by the Australian and New Zealand Governments and the Australian Kidney Foundation.

2. What information is collected about you ?

This information includes your name, age, gender, racial origin, hospital of treatment, some aspects of your medical condition (such as whether you have diabetes) and details about the type of kidney treatment you are receiving (dialysis or transplant).

We DO NOT collect details about your address, telephone number, medical insurance, or non-medical matters such as occupation, income, etc

3. Is personal data ever released ?

The identity of people in the database IS NOT released publicly nor in any reports.. Measures have been put into place to ensure the security of all collected information.

4. What is this information used for ?

The information is used primarily for quality assurance, investigating patterns of kidney disease, and planning appropriate health services. We release reports on a variety of topics, including an Annual Report examining the rates and treatment of kidney failure in Australia and New Zealand. We also have a major role in ensuring the quality of patient care by sending to each kidney unit each year a report outlining their activity. These reports also compare the outcome of the treatment they provide with that of other units throughout the two countries. Reports are also produced at a state and national level, and from time to time analyses are also produced for renal units, government health departments and industry concentrating on particular aspects of renal failure management eg peritoneal dialysis, transplantation, haemodialysis.

5. Can you see what personal information ANZDATA collects and the reports that it produces ?

Individuals are able to view their own information on request. You can request alterations if you believe it is inaccurate. You may also opt not to have your treatment included in this database, and you should let your kidney specialist know if this is the case. You can also choose not to have some information (e.g. racial origin) recorded. However, if your information is not included in the Registry, the ability to compare results in Australia and New Zealand or to analyse the results of different treatment methods and for different patient types (eg diabetics) will be compromised.

The national reports and much other material produced by ANZDATA are available free on the Internet at www.anzdata.org.au, or they can be sent to you on request to the address above. Your kidney specialist will also have copies of many of the reports.

If you wish to discuss any of the issues raised here, please let your doctor know or telephone the ANZDATA Registry direct on 08 8222 6704. You may also write to us (ANZDATA Registry, c/- The Queen Elizabeth Hospital, 28 Woodville Rd SA 5011) or send us an e-mail (anzdata@anzdata.org.au).

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