Cancer is a notifiable disease in NSW and the Cancer Institute NSW collects this information under the provision of the Public Health Act 2010, Public Health Regulation 2012, and Cancer Institute (NSW) Act 2003. The Cancer Institute NSW complies with all requirements of the Health Records and Information Privacy Act 2002.

View more information about the collection of this data >

Data about cancer is vital to be able to provide adequate funding for treatments, inform research on cancer, improve care, and plan and evaluate cancer services. We use the Five Safes to ensure that your data is only accessible to approved users on a secure system.

What information do we collect?

We collect personal information on you relating to cancer-control. This means we collect information about your cancer diagnosis, treatment and care (including palliative care, supportive care and complementary health therapies), prevention, and screening.

The Cancer Institute NSW is committed to protecting the privacy of your information. We are required by law to protect personal information and comply with the Health Records and Information Privacy Act 2002 and other relevant legislation relating to confidentiality and privacy. We protect your privacy by keeping personal information secure from unauthorised access, use or loss.

How do we use your information and to whom do we disclose it?

We will only use or release information that identifies you with your consent, or where we are required or permitted to do so under law.

The ways in which we may do this include:

• to improve the quality of health services and cancer outcomes.
• to contribute to cancer research.
• to provide operational advice to inform funding, planning, safety and quality improvement.
• to monitor and report on our performance to organisations such as the NSW Ministry of Health or Australian Institute of Health and Welfare.
• information may also be provided to a court or tribunal via a subpoena.

For more information, see the service you are interested in: BreastScreenNSW, Quitline and/or NSW Cancer Registry.

You can also acces the NSW Health Privacy Leaflet for Patients. The leaflet is available in multiple languages. 

Management of health services

We use the data we collect to report to the NSW Local Health Districts on their metrics, to encourage continued improvements to treatment outcomes and to allow clinicians primarily in the public health sector to manage health services, and to improve patient outcomes.

Research

The data we collect is also made available to researchers to evaluate and improve the outcomes for people who are diagnosed with cancer. These studies must be reviewed and approved by an appropriate Human Research Ethics Committee.

We may contact you and invite you to take part in an approved research study. Taking part in this sort of research is always your choice and if you don’t want to participate, this will not affect your ongoing or future health care treatment but may benefit other people or assist in early diagnosis or improved treatment options for people.

How can you access your information?

The Health Records and Information Privacy Act 2002 and the Government Information (Public Access) Act 2009 (NSW) sets out rights to access to your information held by Cancer Institute NSW.

If you identify information that is incorrect you can ask that the information be corrected.

If you would like more information on how to request access to your records or to make a complaint about your privacy, please contact the Cancer Institute NSW Privacy Officer on 02 8374 5600 or your Local Health District.

Alternatively for more information please go to: https://www.health.nsw.gov.au/patients/privacy/Pages/privacy-contact.aspx.