The Breast Cancer Foundation National Register (“National Register”) is a confidential database that holds information on breast cancer patients in New Zealand for the purpose of improving the care and outcomes of breast cancer patients. The National Register is owned by the Breast Cancer NZ Register Trust on behalf of the Breast Cancer Foundation which funds the National Register. The National Register is governed by the Board of the Breast Cancer Register Trust and the Clinical Advisory Group (CAG) to the National Register.
The National Register collects information about breast cancer patients on an ongoing basis from hospitals and health professionals in participating District Health Boards (DHBs) regions. Data has been collected from the following inception dates:
- Auckland: Auckland DHB, Waitemata DHB, Counties Manakau DHB - 1 June 2000
- Waikato DHB - 1 January 1991
- Wellington: Capital & Coast DHB, Hutt Valley DHB, Wairarapa DHB - 1 January 2010
- Christchurch: Canterbury DHB, West Coast DHB - 15 June 2009
This data is coded to ensure individual patient details are not identifiable and stored securely on the National Register. De-identified data (which means that individual patients cannot be identified) from the National Register, is used by doctors and researchers to better understand diagnosis, treatment and outcomes of breast cancer patients in New Zealand. National Register data also enables participating DHBs to help plan breast cancer services, and to identify where further progress is needed and to meet audit requirements, e.g. for the BreastSurgANZ Quality Audit, a New Zealand quality assurance activity designed to ensure that breast surgeons, who are committed to improving care, can get the information they need to achieve the highest standards of patient care. (See Health Practitioners (Protected Quality Assurance Activity – BreastSurgANZ Quality Audit Notice))
The National Register holds information about patients in the Auckland, Waikato, Wellington or Christchurch regions from the inception dates listed above. Patients must not have not opted out of the National Register and have a new diagnosis of breast cancer. From January 2017 any patient with a previous history of breast cancer before the inception dates, diagnosed with a new breast primary in the contralateral breast or in the same breast, but a different morphology, is also eligible. Previous history includes;invasive breast cancer, DCIS (ductal carcinoma in situ – a pre-invasive cancer), LCIS lobular carcinoma in situ or PLCIS (pleomorphiclobular carcinoma in siti. (For a full list of eligibility criteria, click here.)
The National Register includes detailed information on the patient’s demographics, diagnosis, treatment and outcomes including clinical notes, surgery and reconstruction information, imaging, pathology, radiotherapy and systemic therapy information, loco regional recurrence, hormonal therapy information, metastatic disease details, lesion sites and follow up information. The National Register includes patient names which are held for the sole purpose of ensuring that patient data is correctly matched to NHI numbers enabling accuracy of data. Names are never shared with third parties.
The NHI is always kept confidential and is only used on occasions when a third party needs to accurately match records e.g. the BreastSurgANZ quality audit, or a researcher studying treatments and patient outcomes. For these requests a secure pathway is used where identified data is coded, linked, stored securely and destroyed after use. This is consistent with current sector standards and is necessary for the purposes of the programme. The National Register does not include patient contact information.
Information is retained on the National Register indefinitely due to its ongoing value for research and audit purposes.
Breast cancer patient data is collected by authorised National Register data managers and administrators on an ongoing basis from public and private hospitals and health professionals in participating District Health Boards (DHBs) regions. Participation is voluntary and patients have the right to opt out at any time.
As this is a long-term National Register, patients are followed-up all their life, and if needed, general practitioners (GPs) may be contacted by an authorised Register Data Manager for annual follow-up data, including information on any prescribed breast cancer medications and any recurrent or new breast cancers.
The Breast Cancer Foundation National Register is an opt-out database. If you do not want to be included, please click here.
Data held about breast cancer patients in the National Register is used for research and audit purposes to improve outcomes for breast cancer patents. Requests for data from the National Register are reviewed by a governance group (for more information refer to 'Access to data on the National Register'). All published data (research or audit results) is de-identified (which means that individual patients cannot be identified).
National Register data is used:
- For direct research
- Epidemiology and changing patterns of breast cancer
- Assessing efficacy and treatment of existing and new treatments
- Identifying regional and NZ-specific cancer trends
- Assessing and addressing inequities in care
- For indirect research to enable other research, e.g. clinical context for cancer genome research
- To enable healthcare planning
- For audits for quality measurement and improvement, e.g. BreastSurgANZ Quality Audit
Information such as names, contact details, organisation, funder name, as well as information about the research proposal is collected for the purpose of assessing the data access application by the Clinical Advisory Group. This information is retained for a minimum of 10 years if the data access application is successful, and five years if the data access application is unsuccessful).
Information such as contact details, organisation name and funder name about authors, researchers and supervisors of published research is retained for a minimum of 10 years. Information relating to unpublished research is retained indefinitely to enable decisions by the Clinical Advisory Group for possible publication of the research in the future.
The National Register operates in compliance to The Privacy Act 1993, Health Information Standards Organisation (HISO) and the Health and Disability Ethics Committee (HDEC) approval.
The Breast Cancer Foundation National Register follows strict protocols for collecting, storing and utilising data for research and audit purposes. Patient data will remain confidential at all times, coded to ensure that patient details are not identifiable and stored securely. There will be occasions when a third party needs to accurately match records, e.g. BreastSurgANZ quality audit, or a researcher studying treatment and patient outcomes. For these data requests, identified data is coded, linked, stored securely and destroyed after use.
To ensure patient confidentiality:
- Data is key-coded or uploaded by authorised National Register personnel (data managers and administrators) only who are bound by their employment contract to maintain confidentiality, and
- Reported data in presentations and publications are always de-identified, that is, no information by which a patient can be identified will be released or published.
- The National Register is stored securely on the Ministry of Health IT platform with other similar clinical Registers
- The National Register complies with the Privacy Act 1993, HISO and has Ethics Committee Approval
All information held in the Register is collected from other sources e.g. your GP, hospital and other health care professionals. At any time you may request access to your patient information or request that the information held about you be corrected by contacting your GP, hospital or healthcare professional. Should a patient contact the National Register to request access to their information then your record details will be provided to you via your GP or other nominated breast cancer specialist within 10 working days.
If at any time you do not wish to be included in the Register or you require any further information about the Breast Cancer Foundation National Register;:
Call 0800 005 849
Or write to
Free Post 104 Breast Cancer Foundation National Register
Private Bag 92189 Breast Clinic,
Level 6, Building 4, Greenlane Clinic Centre,
Doctors and scientific researchers can request access to National Register de-identified data required for their research by completing the online form.
Applications for National Register data that require individual ethical approval, data linkage, are multiregional or national, or are for non-audit purposes are reviewed by the Clinical Advisory Group (CAG) for the Breast Cancer Foundation National Register. The CAG is responsible for scientific, ethical, and cultural review of all applications requesting data from the National Register, with the exception of local data requests. The CAG will ensure that privacy and confidentiality of the extracted data will be protected at all times. The group will review all applications. De-identified data is only released to the applicant following approval from the Clinical Advisory Group for the Breast Cancer Foundation National Register Trust.
Data managers and the local clinical specialist can extract the local patient’s data for audit use or for use at a clinical level, e.g. at the multidisciplinary meeting (MDM), for programme evaluation and quality assurance and audit activities and required reporting to BreastSurgANZ or other professional organisations. This information may only be used internally by the patient carer’s institution and may not be published. The applicant will gain ethical approval from their regional governance group as required. For audits that will be published or is part of a pilot study, then institutional (hospital or university) ethical review may be required. The request may be referred on to the CAG if there any potential issues.
Date: 4 December 2019