Victorian Cancer Registry

We collect details of all cancers diagnosed on the Victorian Cancer Registry. The law (Cancer Act 1982) requires us to do this, so the State has accurate information on cancer rates. Data has been collected since 1982. All information is confidential and held under tight security.

Aims

The aim of the registry is to keep up-to-date and accurate figures, which is useful to improve cancer prevention, control and treatment.

What data is kept?

For each patient with cancer the registry collects:

name and address
date of birth
country of birth
whether or not the person is of Aboriginal or Torres Strait Islander descent
details about the cancer
the treating hospital and doctor.

Personal details, such as names and addresses, are needed to make sure records are correct. This helps us ensure cases are only counted once.

How does data come to be on the register?

When any hospital diagnoses or treats someone with cancer it must, by law, send details to the registry. This also applies to pathology services and cancer screening registers.

What is data used for?

The information we collect is used to:

Monitor the number of new cases and deaths from cancer in Victoria each year and publish regular reports.
Publish occasional reports on particular cancers or aspects of cancer.
Add Victorian figures to the national cancer database.
Help in planning services for the control of cancer (e.g. screening programs).
Help plan and improve services to care for cancer patients.
Measure the quality and effectiveness of cancer treatments.
Measure how well cancer control programs are working.
Develop education programs (e.g. sun protection for schools and Victorians working outdoors).
Provide data for research.
Help with studies to find out what causes cancer.

Who can access the data?

Regular reports are available to the public. They don't disclose names of cancer patients or any other identifying information.

More detailed information is given to the Victorian Department of Human Services, local government authorities, hospitals, doctors and researchers. This information doesn't include patient names.

Identified information (containing patient's names and other details) is given to:

The doctor or health institution who originally provided it.
The Federal Government's Australian Institute of Health and Welfare (AIHW) for compiling national cancer figures. The AIHW reports do not include any identifying information and are available to the general public.
The Family Cancer Centres (of the Family Cancer Service) to assess the risk of cancer to a person by verifying cancers in their family.

Any person can contact the registry to ask whether we hold information about them and/or to access their records.

Researchers can ask for identified information about cancer patients (see forms and procedures below) but all requests must be approved by our Human Research Ethics Committee (HREC). This is a group of independent experts whose job is to weigh the public interest in the research against the individual interests in privacy. Permission will only be given if the project meets strict conditions, including:

It must be scientifically sound.
It must be likely to contribute to the control of cancer or to the improvement in the care of cancer patients.
The HREC must approve access to the information. They will only do this if they are sure that there are adequate safeguards for the rights of the patients identified and the confidentiality of the information. They must also be satisfied that it is really necessary that identified information is used.
The researchers must undertake to only use the information they have been granted access to. They must also agree to protect the confidentiality and privacy of the information to the same degree as the Victorian Cancer Registry itself.

Download:

Victorian Cancer Registry procedures and forms for data access (PDF 320kb)

More details

If you'd like to find out more, contact the Director of Information Systems on (03) 9635 5318. Any complaints should also be addressed to this number. If your issues can't be resolved, call the Office of the Health Services Commissioner (HSC) on (03) 8601 5200 or 1800 136 066 (toll free). The HSC is an independent, impartial statutory authority with responsibility for health services and the privacy of health information in Victoria.