Collecting data on cancer is an important process that enables state and territory governments to understand the characteristics of the people diagnosed with cancer: where they are located, the type/s of cancer they have been diagnosed with, and other relevant information. This information is crucial for planning and delivering services in an effort to meet the needs of those diagnosed with cancer.
All the information that is collected is held in state and territory based cancer registries. Each of the cancer registries is operated independently from the others. For example, in some states and territories the registry may be managed by the state or territory government, in other states and territories it may be managed by the Cancer Council.
When a patient is diagnosed with cancer, doctors are required to provide details of the diagnosis to the cancer registry.
For each patient with cancer the registry typically collects:
- name and address
- date and country of birth
- whether or not the person is of Aboriginal or Torres Strait Islander descent
- details about the cancer
- details about the treating hospital and doctor.
Personal details, such as names and addresses are needed to make sure records are correct and not duplicated. Regular reports on cancer registry data are made available to the public, but they do not contain people's names, or any other identifying information. Any person can contact the registry to ask whether they hold information about them and/or to access their records.
Usually the information that is collected about your cancer, relates only to a diagnosis of a primary, or early, cancer. For women with breast cancer this will be information associated with a diagnosis of early breast cancer (where the cancer is confined to the breast and/or lymph nodes).
The cancer registries do not currently collect information about whether a woman has developed secondary breast cancer, also called metastatic or advanced breast cancer. (Secondary breast cancer is where the cancer has spread from the breast to other parts of the body, typically the bones, lungs, liver or, less commonly, the brain). There is no information collected on how advanced the cancer is, or where it has spread.
As a result, in Australia we do not know how many women are diagnosed with secondary breast cancer each year or how many women are living with secondary breast cancer at any one time. We don't know where these women live, how old they are, or what the characteristics of their cancer are. This makes it very difficult to effectively plan and deliver services to women living with secondary breast cancer.
In 2007, National Breast and Ovarian Cancer Centre (NBOCC, now amalgamated with Cancer Australia) developed a method for estimating the prevalence of secondary breast cancer (which is the total number of women living with secondary breast cancer usually over a particular period of time, for example 25 years). BCNA participated in the project reference group.
Through this project, which has been completed, a tool was developed to estimate the numbers of women living with secondary breast cancer. The results of the project have been submitted to a specialist journal for publication. Publishing in a specialist journal adds credibility to the project results, and also means that the results will be widely shared with other experts working in this area.
In 2008, NBOCC conducted another project to develop a set of criteria for the information that should be collected on women with breast cancer, by the cancer registries. This is called a minimum data set. The data set will enable common, consistent and high-quality breast cancer data to be collected by state and territory cancer registries and collated nationally. This included items which would capture a diagnosis of secondary breast cancer.
On completion of the project NBOCC met with each of the cancer registries to promote the data set. Adopting the data set is complex however, as the cancer registries need to modify their data bases and ensure the data is all received and then recorded. This requires additional funding and staffing to implement and then operate the new system.
NBOCC has also sponsored the establishment of trials in Victorian and Western Australia to find ways to actually collect data on secondary breast cancer by cancer registries. This is also more complicated than it sounds, as it requires identifying which health professionals must report a diagnosis of secondary disease, the best way for them to do this, and following up on any missing pathology information. The current trials are due to finish in June 2013.
BCNA will continue to monitor and advocate for the collection of data on secondary breast cancer. We will update this page as further information becomes available.
Last updated 28 June 2012