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 4,000 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 Mate Ūtaetae - Breast Cancer Foundation 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 Mate Ūtaetae - Breast Cancer Foundation National Register, 30,000 voices: Informing a better future for breast cancer in Aotearoa New Zealand 2003-2020

Te Rēhita Mate Ūtaetae contains patient data going back to 1991. Breast cancer patient data on Te Rēhita Mate Ūtaetae has been used for clinical studies, data analysis and audits. Research conducted from Te Rēhita Mate Ūtaetae has led to a steady improvement in breast cancer management.

New Zealand’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.

Why we need a breast cancer patient register

“The register helps improve the care of current and future breast cancer patients.”

- Dr Alison Foster, Chair of the Clinical Advisory Group

Aotearoa New Zealand needs a national breast cancer patient register because breast cancer is a significant health issue in New Zealand. It is the leading cause of cancer deaths for women with Māori and Pacific women disproportionately affected. New Zealand women have a higher death rate from breast cancer compared to other countries such as Canada, the United States and Australia. To learn more about breast cancer in New Zealand click here.

The register has been operating for over 20 years. It is a confidential collection of information, vital for doctors, researchers and health planners to understand breast cancer better. Learnings from research studies and analysis of the data have led to steady improvements in breast cancer care.

The register is a taonga | treasure benefiting future generations of Aotearoa New Zealand.

What can I do to help?

Please allow your information to be included in Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register for the ongoing review of standards of care, health planning and research.

Collecting every breast cancer patient’s information is important. The more complete the register information is, the greater the value. You don’t have to do anything. After you have been diagnosed with pre-invasive or invasive breast cancer approved staff automatically and securely collect your data from hospital systems, national collections and other health sources. Participation is voluntary, and you have the right to opt out at any time, though less than 1% of patients choose to do so. You can find out more about opting out here.

We collect the following information

• your NHI number, name, age, ethnicity, postcode
• your breast symptoms and risk factors
• your diagnostic information
• treatment you received in hospital
• ongoing care and wellness after discharge

We record your breast cancer status over your lifetime. This includes if you have a breast cancer recurrence, development of advanced breast cancer or if you are disease-free. It also includes the use of long–term breast cancer medications and other information for improving our understanding of breast cancer and improving outcomes.

Thank you for participating. You are helping to improve breast cancer outcomes

Am I eligible?

From 1 January 2020, all patients are included Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register if you have a new diagnosis of invasive breast cancer, DCIS (ductal carcinoma in situ – a pre-invasive cancer), LCIS (lobular carcinoma in situ), Paget’s disease, Breast Sarcoma, borderline Phyllodes tumour or malignant Phyllodes tumour.

If your diagnosis was prior to 1 January 2020 you can find out if you are eligible for inclusion, based on the inception date for your region.

You are not eligible for inclusion if you have been diagnosed overseas.

For a full list of eligibility criteria click here.

How is my data used?

A governance group called the Clinical Advisory Group (CAG) is responsible for managing the information in Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register. They are also responsible for approving use of the data. The data can only be used for the purpose of improving equity, diagnosis, treatment, standards of care and outcomes of breast cancer. The group includes breast cancer doctors as well as Māori, Pacific, researcher and patient representatives. The group follows a process to ensure every data request meets the purpose and that the appropriate approvals are in place prior to the data use.

Your information enables us to:

·understand more about breast cancer

·improve diagnosis and treatment

·identify inequalities in patient care

·monitor and continually improve breast cancer care and survival

Your data is used by doctors and hospitals for clinical audit and other clinical use, health planning, advocacy, education and awareness programmes, and research. All these uses of the data help improve equity, care and breast cancer outcomes, and clinical audits are also used to improve diagnosis and treatment. Your identifiable data may be provided back to your treating clinician or hospital for quality assurance or care purposes.

Register information is securely linked and combined with information from other organisations; such as, Manatū Hauora Ministry of Health, Te Whatu Ora - Health NZ and other breast care health providers, and also used in audits like BreastSurgANZ Quality Audit. For more information on breast cancer auditsclick here.

Health planning

Health planners use the data to help assess the health care needs of breast cancer patients, to help set priorities and allocate resources to new and existing breast cancer programmes and to evaluate those programs e.g. Pharmac might request data to help assess the need for a new drug. Findings and statistics may also be used by organisations that advocate on behalf of breast cancer patients for more funding and services for breast cancer care e.g. data analysis to support increasing the screening age to include those aged 70 – 74.

Research

With CAG approval register data is used for research purposes to help improve treatment and care. This may include providing data to support clinical trials. Researchers are provided coded data only (your details are not identifiable). If data linkage to another dataset is required for research purposes then a secure, coded process to link data for research is followed. Research data is stored securely and destroyed after use.

Read about the latest breast cancer research studiesclick here

Further reading:click herefor 30 published reports.

How is my information collected?

Authorised staff from Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register securely collect, enter and audit your information by either manually key-coding data, uploading data or managing automated electronic feeds from your health records, national collections and other health sources.

Manatū Hauora Ministry of Health automatically loads your National Health Index (NHI) information (name, sex, ethnicity, data of birth, postcode) into the breast cancer register, and your National Health Index (NHI) patient identifier number is used to accurately match your record.

Both the New Zealand Cancer Registry and Mortality Collection provide breast cancer data to Te Rēhita Mate Ūtaetae to help audit data completeness and quality.

How is my information kept confidential?

Te Rēhita Mate Ūtaetae - Breast Cancer Foundation 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.

All register data is safeguarded by New Zealand privacy and confidentiality laws.

To ensure patient confidentiality:

• Data is securely collected, entered and stored by authorised staff who are bound by their employment contract to maintain confidentiality. For more information on how your information is collected click here.
• The system is securely housed in New Zealand, in an ISO 27001 certified secure environment on a Ministry of Health IT platform with other similar clinical registers.
• Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register complies with the Privacy Act 2020, the Health Information Privacy Code, the National Ethics Standards for Health and Disability Research and Quality Improvement and is guided by Te Tiriti o Waitangi and Māori data sovereignty principles.
• Only authorised staff are only able to access your data by first logging into a Te Whatu Ora hospital network, then logging into the register through a secure firewall. Direct access via the internet is not allowed.
• Data may also be linked to a third party 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.
• No information by which a patient can be identified will be released to a researcher or published. Reported data in presentations and publications is always de-identified.
• Randomised unique numbers are provided in each research dataset extract so a researcher with more than one project cannot link between projects.

Why do we want to link and automate data collection?

Automated data collection (rather than manual data entry) enables Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register’s to maintain data accuracy, completion and timeliness, as well as help reduce data collection costs.

Data/information is securely and accurately linked using your NHI.

Examples of health agencies/ organisations and data sets which provide information on your breast cancer risk factors and symptoms, diagnoses, histopathology, treatments, and follow-up to be automated are;

·Manatū Hauora Ministry of Health National Collections including, but not limited to; National Minimum Dataset (NMDS), Pharmaceuticals Collection, National Non-Admitted Patient Collection, National Patient Flow, Primary Health Organisation Enrolment Collection.

·Te Aho o Te Kahu, Cancer Control Agency systems and data collections including, but not limited to; Radiation Oncology Collection (ROC), Structured Pathology Collection (in development), Anti-Cancer Therapy Collection (ACT-NOW in development), Faster Cancer Treatment Indicator Collection, CanShare (in development).

·Te Whatu Ora systems and data collections including, but not limited to; Hospital Clinical Portals, Multi-disciplinary Meetings (MDMs) data, hospital district or regional data warehouses, National Badgernet and National Maternity Collection, Event Notification Service (in development), NZ electronic prescribing service (NZePS).

Other health systems and data collections including, but not limited to; National Screening Unit - BreastScreen Aotearoa, Laboratories, Private clinics, General Practice systems

What if I want to opt out?

Participation in Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register is voluntary. Opting out will not affect your breast cancer care in any way. You will automatically be included in the register unless you choose to opt-out.

If at any time you do not wish to be included in Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register or you would like any further information please:

Email us atadmin@breastcancerregister.org.nz

Phone us on 0800 005 849

Write to us at

Breast Cancer Foundation National Register, Free Post 104
Private Bag 92189

Auckland 1142

Health and Disability Ethics Committee approval

Te Rēhita Mate Ūtaetae - Breast Cancer Foundation National Register has been reviewed and approved by the Health and Disability Ethics Committee and at all participating health institutions across New Zealand. Ethics number: 2023 AM 5785 (28th July 2023)

If you have any concerns about the ethics of the breast cancer register, please contact the Health and Disability Advocacy Services on Freephone: 0800 555 050 or email: advocacy@advocacy.org.nz.

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

Visit the BCFNZ website