Waikato Breast Care Register

Why do we need a breast care register?

Because breast cancer is the most significant health issue for New Zealand women. It is the leading cause of cancer deaths for women. Maori women are 1 ½ times more likely to die from their cancer than non-Maori, and all New Zealand women have a higher death rate from breast cancer when compared to other countries such as Australia, Canada and the United States.

Why is this?

• Is it that in New Zealand women develop more aggressive breast cancer compared with other countries?
• Is it that cancer is detected at a later stage compared with other countries?
• Is it that our treatments are inferior?

“How do we know how we are doing if we don’t know where we have been?”

The Waikato Breast Care Register (WBCR) aims to create a comprehensive picture of the many factors that influence the breast cancer pathway and return to health.

• The person - Presenting conditions, risk factors, lifestyle influences, age, gender, ethnicity, where you live, other medical conditions and family history.
• The way a cancer is diagnosed - Diagnostic procedures undertaken including mammography, ultrasound scanning, magnetic resonance imaging (MRI). Tissue biopsy procedures, cytology and histopathology.
• The cancer itself - Pathological findings i.e. the specific type, size, grade, behaviour and other characteristics.
• The treatments - Surgical procedures, referral and use of chemotherapy, radiotherapy and cancer medications.
• Long term follow-up to assess the results - Yearly follow up status, health surveillance, screening tests and medicine changes/management. Has the cancer returned, has there been a new breast or other cancer diagnosed, has the treatment provided a long term cancer free state?

The register is working to provide essential health information that will lead to a better understanding of breast cancer demography, diagnosis, treatment and outcome. We hope to support more effective delivery and provision of clinical resources available to the women of the greater Waikato region.

How do we do this?
The register is a computerised database where information is entered and stored in a confidential manner.

With permission, detailed information is collected from information given by the patient, and the different services that support patient care through the pathway. This includes your family doctor if you have been discharged from specialist care.

Who is invited to participate in the Waikato Breast Care Register?
Participation is voluntary and written consent is requested at the first specialist doctor appointment. If you live in the greater Waikato region and your cancer has been diagnosed since the 1st of January 2005 you are eligible. You can participate if you are male or female, if your care has been provided in the public or private sector, via any breast screening programme or referral to a service from your GP. You can be any age or nationality. For detailed information view the patient information sheet.

Currently Auckland and Christchurch have similar breast cancer registers. This provides us the ability to compare results with other regions. It is hoped that in time there will be national coverage to enable analysis of differences locally, regionally and nationally.  Breast Cancer specialists have been advocating for the Ministry of Health to develop a national breast cancer register for many years.   While we wait, and wait, and wait for action we continiously fundraise to retain our staffing levels and maintain your local breast cancer register with the expectation that it will provide some insight and answers for those who need better outcomes now!

Aims
The register aims to provide a tool to help the medical team and health service providers to define the true incidence and nature of the group of diseases collectively known as breast cancer. We aim to enable review of current patterns of care and evaluate the outcomes for those who experience breast cancer. The goal is to enable local and nationwide improvements in breast cancer care and elimination of inequalities faced by women in New Zealand. Interested in more specific aims? click here for further detail

Who can use the information?
Requests for data are welcomed.  All data released is in a form that does not identify any individuals and is critiqued and approved by the WBCR Executive Group before release. This group consists of senior clinicians from varied disciplines and provides governance over who can use the data and for what purpose, along with any cost that may be incurred, if any download data request form.
 

Na te tirohanga whakamuri, ka ahei ki te anga whakamua!
He toa takitahi
He toa takitini
He toa wahine

Because of the efforts of the past, there is an opportunity to progress forward effectively
Acknowledges the contributions of individuals
Acknowledges the contributions of the community
Acknowledges woman being supported and strengthened

The WBCR Team would like to thank the nurses, doctors and support staff for their contribution and dedicated efforts in recruitment to the register and enabling collection of quality data for the greater Waikato region.  Without this support it would be an impossible task.  We would like to acknowledge Margaret Brighouse (former WBCR coordinator) and the contribution she made from 2004-2008.  Also we would like to thank the Auckland Breast Cancer Register team, past and present, and our colleagues in Christchurch for their ongoing support.  We express our sincere thanks to the New Zealand Breast Cancer Foundation for the continued support shown in their commitment to financial funding of the WBCR for the three years 2007-2010.