Cancer (clinical) NBPDS
Data Set Specification Attributes
Identifying and definitional attributes
|Metadata item type:||Data Set Specification|
Health, Standard 14/05/2015
|DSS type:||Data Set Specification (DSS)|
The purpose of the Cancer (clinical) National best practice data set (NBPDS) is to define data standards for the national collection of clinical cancer data so that data collected is consistent and reliable. Collection of this data set is not mandated but it is recommended as best practice if clinical cancer data are to be collected. It will facilitate more consistent data collection while enabling individual treatment centres or health service areas to develop data extraction and collection processes and policies that are appropriate for their service settings.
Mandatory reporting regulations have enabled population-based cancer registries in Australia to collect standard information on all incident cases of cancer apart from non-melanoma skin cancers, from which incidence, mortality and overall survival have been determined and trends monitored. The Cancer (clinical) NBPDS provides a framework for the collection of more detailed and comprehensive clinical data such as stage of cancer at diagnosis, other prognostic characteristics, cancer treatment and patient outcomes.
The Cancer (clinical) NBPDS will support prospective data collection from the time a person with cancer symptoms is referred or first presents to a hospital or specialist through the entire duration of their illness.
The majority of data items in the Cancer (clinical) NBPDS are applicable to most solid tumours while many are also relevant to the haematopoietic malignancies such as leukaemia and lymphoma. Data sets for specialist tumour streams are also under development and these will contain supplementary data elements that will capture the special features of specific cancer types.
The definitions used in this data set are designed to capture the provision of cancer care on a day-to-day level. They relate to the cancer care pathway and the need to optimise care by correctly diagnosing, evaluating and managing patients with cancer. In addition, end-points and patterns of care can be monitored to understand both the appropriateness and effectiveness of cancer care.
The data elements specified provide a framework for:
They will facilitate the aggregation of data across different treatment centres.
The underlying long-term goal is to provide data support to improve outcomes for patients by increasing the quality and length of life. For example, a comparison of the actual management of patients with best practice guidelines may identify shortfalls in treatment and limitations in access to treatment modalities for some patients.
The working group formed under the stewardship of Cancer Australia was diverse and included representation from the following organisations: Cancer Australia, University of Sydney-Department of Gynaecological Oncology, Westmead Institute for Cancer Research, Cancer Council Victoria, Royal Brisbane & Women’s Hospital, National Breast and Ovarian Cancer Centre, The Royal Women's Hospital, Queensland Health, Ministry of Health, NSW Health, TROG Cancer Research, and the Cancer Institute NSW.
To ensure the broad acceptance of the data set, the proposed list of data items was circulated to members of Cancer Australia’s National Cancer Data Strategy Advisory Group, a multidisciplinary group with a broad spectrum of epidemiological knowledge and expertise, and the inter-governmental Strategic Forum, comprising clinicians and senior health department officials from the Australian Government and from each state and territory government, and with strong community representation. The working group also sought consultation from cancer registry data managers, clinical leaders, pathologists, medical oncologists and radiation oncologists to achieve consensus when required.
The Cancer (clinical) NBPDS is intended to only describe data collected in relation to the initial course of cancer treatment. The initial course of treatment includes all treatments administered to the patient from diagnosis and before disease progression or recurrence.
Collection and usage attributes
|Guide for use:|
The Cancer (clinical) NBPDS contains six data clusters relating to cancer treatment. To ensure a complete description of the clinical management of cancer, it is recommended that if the patient has had the specific treatment modality the cluster refers to, each data item within the cluster should be completed.
The data clusters are as follows:
Data is to be collected for the initial course of cancer treatment. The initial course of treatment includes all treatments administered to the patient from diagnosis and before disease progression or recurrence.
This data set is primarily directed at the clinical and clinical epidemiological use of cancer data. Treatment centres such as hospitals, radiotherapy centres and cancer specialist practices are the settings in which implementation of the core Cancer (clinical) NBPDS should be considered. The data set can also be used by a wider range of health and health-related establishments that create, use, or maintain records on health-care clients.
Source and reference attributes
|Related metadata references:|
See also Adolescent and young adult cancer (clinical) NBPDS
Health, Standard 14/05/2015