For patients – how you can help

Breast cancer in New Zealand

• Breast cancer is the most common cancer in women, with one in nine women diagnosed in their lifetime and more than 3,500 diagnosed each year.
• Breast cancer in men is less common, with about 25 men diagnosed each year.
• Breast cancer survival rates are among the highest of all cancers, thanks to scientific advances and ever-improving standards of treatment and care. Data from Te Rēhita, the National Register, has shown that our breast cancer survival rates are 91% for five years and 86% for 10 years.

Breast cancer-specific survival rates	5 year	10 year
Aotearoa New Zealand	91%	86%

_{Source: Te Rēhita, the National Register, 30,000 voices: Informing a better future for breast cancer in Aotearoa New Zealand 2003 - 2020.}

Te Rēhita, the National Register, contains patient data going back to 2000. Breast cancer patient data on Te Rēhita, the National Register, has been used for clinical studies, data analysis and audits. Research conducted from Te Rēhita, the National Register, has led to a steady improvement in breast cancer management.

NZ’s progress in tackling breast cancer

In the first and biggest study of its kind, we’ve analysed data in Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register.

Our report, 30,000 voices: Informing a better future for breast cancer in Aotearoa New Zealand, looks at how New Zealand is doing when it comes to breast cancer diagnoses and treatment. Click here to find out more and get a copy.

What can I do to help?

We're asking you to allow your information to be included in Te Rēhita, the National Register, for the ongoing review of standards of care and research. This includes seeking information from your GP about annual follow-up data, including breast cancer medications prescribed and any recurrent or new breast cancers. The more complete the data, the greater the value of Te Rēhita, the National Register, for improving treatment and care in the future.

How do I get on Te Rēhita, the National Register?

The data is collected automatically from hospitals and healthcare professionals, so there's no need for you to do anything. This data is kept strictly confidential. Participation is voluntary, and you do have the right to opt out, though less than 1% of patients on Te Rēhita, the National Register, choose to do so. You can find out more about opting out here.

Am I eligible?

From 1 January 2020, all patients will be included Te Rēhita, the National Register, if they have a new diagnosis of invasive breast cancer, DCIS (ductal carcinoma in situ – a pre-invasive cancer) or LCIS (lobular carcinoma in situ). If your diagnosis was prior to 1 January 2020, see here if you are eligible for inclusion, based on the inception date for your region. For a full list of eligibility criteria click here.

How do I access my information?

Te Rēhita, the National Register, data is collected from your GP, hospital and other healthcare professionals. At any time you may request your patient information, or request that the original source information be corrected by contacting your GP, hospital or healthcare professional. You can also contact Te Rēhita, the National Register, on 0800 005 849 or email admin@breastcancerregister.org.nz to request your information. Your record details will then be provided to you via your GP or other nominated breast cancer specialist within 10 working days.

Te Rēhita, the National Register, follows strict protocols for collecting, storing and using data for research and audit purposes. Patient data is stored securely, will remain confidential at all times and is coded to ensure that patient details are not identifiable. There will be occasions when a third party needs to accurately match records, e.g. to take part in a BreastSurgANZ quality audit, or a researcher who is studying treatment and patient outcomes. For these data requests, identified data is coded, matched to records, stored securely and destroyed after use.

To ensure patient confidentiality:

• Data is key-coded or uploaded by authorised data managers only who are bound by their employment contract to maintain confidentiality, and
• Reported data in presentations and publications are always de-identified. That means that no information by which a patient can be identified will be released or published.
• Te Rēhita, the National Register, is stored securely on the Ministry of Health IT platform with other similar clinical registers
• Te Rēhita, the National Register, complies with the Privacy Act 1993 and has Ethics Committee Approval

Patient rights

You can request a copy of your care management data at any time from your breast specialist or GP. This is the primary source for Te Rēhita, the National Register data.

If you have further concerns regarding your rights as a participant in this register, you can contact an independent Health and Disability Advocate. This is a free service provided under the Health and Disability Commissioner Act.

What if I want to opt-out?

If at any time you do not wish to be included in Te Rēhita, the National Register, or you would like any further information about Te Rēhita Mate Ūtaetae, the Breast Cancer Foundation National Register, you can contact us.

Email us at admin@breastcancerregister.org.nz

Call at 0800 005 849

Write to us at:

Free Post 104 Breast Cancer Foundation National Register
Private Bag 92189 Breast Clinic,
Level 6, Building 4, Greenlane Clinic Centre,

Auckland 1142

Te Rēhita, the National Register, operates as a not-for-profit charitable trust funded by Breast Cancer Foundation NZ (BCFNZ). BCFNZ has committed to fund Te Rēhita, the National Register, until 2024. You can help keep Te Rēhita, the National Register, going by donating here.

Visit the BCFNZ website