The National Health Information Standards and Statistics Committee (NHISSC) was formed in August 2008 to oversee the development of, and endorse:
- data standards for inclusion in the National Health Data Dictionary;
- Mandatory National Minimum Data Sets for national implementation;
- best practice Data Set Specifications for inclusion in the National
- Health Data Dictionary; and
- national e-health informatics standards.
More information see NHISSC
National Minimum Data Sets and Data Set Specifications
A National Minimum Data Set (NMDS) is a minimum set of data elements agreed for mandatory collection and reporting at a national level. It may include data elements that are also included in other national minimum data sets. An NMDS is contingent upon a national agreement to collect uniform data and to supply it as part of the national collection, but does not preclude agencies and service providers from collecting additional data to meet their own specific needs.
Data Set Specifications (DSS) are metadata sets that are not mandated for collection but are recommended as best practice.¹
There are currently no National Minimum Data Sets for cancer-related data. However, two Data Set Specifications exist for cancer-related data:
- The Cancer (clinical) Data Set Specification; and
- The Breast cancer (Cancer registries) Data Set Specification.
Cancer Australia is currently involved in the development of a number of data sets which will be submitted to NHISSC for endorsement as Data Set Specifications (DSS). These data sets include:
- Biospecimen data set specification for tissue banking
- Data set specification for lung cancer
- Data set specifications for prostate and testicular cancers
- Data set specification for Adolescents and young adults with cancer
- Data set specification for Gynaecological cancer
The development of these DSS will support a more coordinated and consistent approach to the collection of cancer data. Over time, the availability of these data will provide more accurate information on national trends, diagnoses, health service utilisation and, ultimately, improved health outcomes.
Cancer Australia is working closely with the Royal College of Pathologists of Australasia and the Cancer Institute NSW to ensure that its data development work complements the structured pathology reporting protocols currently being developed.
Cancer (clinical) Data Set Specification
Cancer Australia has stewardship of the Cancer (clinical) Data Set Specification C(C)DSS, formerly known as the NCCI Minimum Data Set.
A working group was established in 2008 to review the DSS to ensure its currency and relevance. Following revision of the data items, it was decided to review all definitions. The working group has consulted widely in the revision of the data items and development of definitions.
Cancer Australia has finalised the revised C(C)DSS and the National Health Information Standards and Statistics Committee endorsed this data set in November 2011. The C9C)DSS is available on the National Health Data Dictionary.