Privacy policy
The Consultative Council on Obstetric and Paediatric Mortality and Morbidity is authorised under section 162 of the Health Act 1958, amongst other statutory functions, to establish and maintain a register of congenital abnormalities. This register is known as the Victorian Birth Defects Register (VBDR).
In order to maximise the ascertainment of birth defects, the VBDR seeks information from a variety of sources. These include hospitals, paediatricians, general practitioners, maternal and child health nurses and pathology services. Identifying patient information is required to ensure that the register is accurate and in order to link infant and maternal data.
The Act also states that Council may for the purpose of performing its functions under section 162F(1) request a health service provider to provide information to the Council, and despite any other Act or law, a health service provider to whom a request is made is authorised to provide the information requested to the Council. Therefore individual consent is not required in order to provide relevant information to the Council.
In return, the Council is obliged under the same Act to protect the confidentiality of this information, which involves not publishing identifying information, and not releasing information to any other party except in the limited circumstances prescribed in the Act. In addition, strict security arrangements apply to information held by the Council. Foremost consideration is that the release of data will not endanger the confidentiality of the information.
The Chair of the Council reviews all requests for information. Formal research proposals must conform to the National Health and Medical Research Council Statement on Ethical Conduct in Research Involving Humans and be approved by a properly constituted Human Research Ethics Committee.
The Council encourages the use of data in order to fulfill the functions of the VBDR, which are as follows:
- Determine how often birth defects are occurring in Victoria and identify changing health service needs (prevalence and survival data);
- Give statistical information to organisations responsible for planning and providing health care facilities for those with birth defects, or who provide information to those concerned about having a baby with a birth defect;
- Provide information for epidemiological research to increase knowledge of aetiology and preventability of birth defects;
- Assess effectiveness of primary prevention and screening for birth defects;
- Investigate reports of community and health provider concerns related to perceived clusters or changes in frequency of birth defects; and
- Provide data to the National Perinatal Statistics Unit and to the International Clearinghouse for Birth Defects Monitoring Systems.
The VBDR Privacy Policy can be downloaded below:
Victorian Birth Defects Register - Privacy Policy February 2007 (24kb, pdf)