For patients and whānau – how you can help

What's on this page

• Why do we need a breast cancer patient register?
• What can I do to help?
• Am I eligible?
• How is my information used?
• How is my information collected, kept confidential and secure?
• How do I opt out?
• How do I access my information?
• Health and Disability Ethic Committee (HDEC) approval

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 Aotearoa New Zealand. It is the number one cancer for women and the leading cause of death for women aged under 65, with Māori and Pacific women disproportionately affected. Over 650 people die of breast cancer each year. 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, a treasure benefiting future generations of Aotearoa New Zealand.

How we help improve breast cancer outcomes

Information from the Register has been used in over 50 research studies, as well as supporting data analyses and audits that have helped drive steady improvements in breast cancer care and outcomes. Examples include:

• Analysis of HER2-low breast cancer in Aotearoa New Zealand a nationwide retrospective cohort study. The findings suggest a significant proportion of women with invasive breast cancer in New Zealand could benefit from new HER2-targeted treatments. There is a need to standardise HER2 testing to enhance personalised treatment and improve outcomes. Click here to read more.
• Breast Quality Performance Indicators (QPIs) are used to improve the quality of cancer services and deliver better outcomes for people diagnosed with breast cancer. Click here to find out more.
• 30,000 voices: Informing a better future for breast cancer in Aotearoa New Zealand (2003–2020) shows improved outcomes over time across all ethnicities and where we can improve further. Click here to find out more.
• “I’m still here”: Insights into living – and dying – with advanced breast cancer in New Zealand identifies areas for improvement in advanced breast cancer. Click here to find out more.

Explore more of our work:

• Latest Research
• Clinical Audits
• Published Research

What can I do to help?

Please gift us your information. 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. We include your breast cancer patient information in the Register unless you contact us to opt out. 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.

After you have been diagnosed with pre-invasive or invasive breast cancer, we collect your information from your health records held by hospitals, laboratories and other health providers like GPs. This ensures your information is accurate and complete. We use your National Health Index (NHI) number to safely link to these records. Only authorised staff can access your information.

Your information is collected and stored securely according to The Privacy Act 2020, Health Information Privacy Code and Health and Disability Ethics Committee (HDEC). We are guided by Te Tiriti o Waitangi and Māori data sovereignty principles.

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.

Together we can save lives.

Am I eligible?

From 1 January 2020, all patients are included in the Register automatically following 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.

Patients who are diagnosed overseas but receive treatment in New Zealand are eligible for inclusion.

For a full list of eligibility criteria click here.

How is my information used?

Our Clinical Advisory Group (CAG) is responsible for managing the information in the Register and approving use of Register data. Register data can only be used for the purpose of improving equity, diagnosis, treatment, standards of care and outcomes of breast cancer. This governance group includes breast cancer doctors as well as researchers, ethics, Māori, Pacific 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. Data use is also guided by Te Tiriti o Waitangi and Māori data sovereignty principles.

Your information 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 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 Researchers are only provided de identified data. Research data is stored securely and destroyed after use. Doctors and hospitals may use identifiable data to help provide and improve care, such as through the BreastSurgANZ Quality Audit. In these cases, information is securely linked using your NHI number.

Register information is securely linked and combined with information from other organisations, such as Health NZ and other breast care health providers. It is also used in audits like BreastSurgANZ Quality Audit.

For more information on breast cancer audits click 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 register staff follow a secure, coded process to link data. Researchers only receive de-identified data. Research data is stored securely and destroyed after use.

Further reading:

Read about the latest breast cancer research studies click here.

Click here for over 50 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

My privacy rights

The Register complies with New Zealand privacy laws. The doctor treating you can provide more information on your privacy rights, or you can contact us, or view our Privacy Policy.

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.

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 at admin@breastcancerregister.org.nz

Phone us on 0800 005 849

Or talk to your doctor or nurse.

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 us by email at admin@breastcancerregister.org.nz or phone us on 0800 005 849

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