Data set development

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.

Click here for more information on 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.

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 now 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 is now finalising the necessary documents prior to forwarding the revised C(C)DSS to the National Health Information Standards and Statistics Committee for endorsement. It is anticipated that this will take place late in 2010

The availability of a revised C(C)DSS will facilitate subsequent specialist DSS development. 

Biospecimen data set specification for tissue banking

A small working group has been involved in the development of biospecimen data set specifications for tissue banking.

The National Cancer Data Strategy identified the need to develop national guidelines and data set standards for the collection of biospecimens. The development of this DSS is the first step in establishing a more coordinated national approach to the collection of biospecimen data items. A more coordinated and consistent approach to the collection of these data items will improve access to specimens, and the availability of biospecimen data for translational research.

Biospecimen tissue banks provide an invaluable resource for cancer research which will only increase in significance. The development of the DSS will support a nationally consistent approach to the collection of data across all tissue banks, irrespective of size. 

Definitions to support the DSS are being finalised.  

Data set specification for lung cancer

A working group to support the development of a DSS for lung cancer has been established under the auspices of Cancer Australia’s National Lung Cancer Advisory Group.

The working group has consulted widely in the development of these data items, and met in Sydney in September 2010 to finalise the proposed data set. Work on the development of the data definitions for the new data items has begun; these definitions will be circulated widely before being finalised by the working group. It is anticipated that this work will be completed, and the new DSS submitted to NHISSC for endorsement early in 2011.

Strategies for pilot testing the new data set are currently being considered. Organisations interested in participating in pilot testing the DSS and data dictionary are encouraged to contact Cancer Australia via email: lungcancer@canceraustralia.gov.au

Data set specifications for prostate and testicular cancers

Cancer Australia is delighted to be collaborating with Andrology Australia on the development of a DSS for prostate cancer and a DSS for testicular cancer. Working groups have been established for both projects.

Proposed data items for the DSS for prostate cancer have been collected and collated from working group members. Almost 300 specialist items have been suggested, and the working group is now in the process of reducing this to a more realistic and manageable number. Consultation with key stakeholders will occur prior to finalising both the data items and definitions for this DSS

Work to develop a DSS for testicular cancer is currently on hold pending the finalisation of the structured pathology reporting protocol for testicular cancer.

Adolescents and young adults with cancer

Currently no clinical data sets exist for adolescent and young adults (AYAs) with cancer, either internationally or nationally. AIHW and cancer data registries currently report on age standardised incidence, mortality and survival. 

Data items developed for AYA cancers will need to complement data items currently collected under the Cancer (clinical) data set specification.

Improving AYA cancer service delivery depends on reliable and widely available data collection on treatment strategies in identifying quality clinical outcomes. The AYA clinical data set would complement the Cancer (clinical) data set specification and could include clinical data on co-morbid conditions, cancer stage, treatment approaches, recurrence, clinical trial participation and exposure to multidisciplinary care, palliative care and psychosocial support and other outcomes. 

Cancer Australia has received funding under CanTeen’s Youth Cancer Networks Program to investigate the best approach to the development of a DSS for adolescents and young adults with cancer.

A working group has been convened and has finalised clinical items for inclusion in the proposed DSS. It is proving more challenging to develop a DSS covering those data items which fall beyond the immediate clinical point of care, for example, psychosocial issues, educational and/or vocational engagement, and sexual health.

The working group is continuing to explore options for collecting these data and will consult with key stakeholders before these items, their definitions, and process for their collection are finalised.  

Gynaecological cancers data management project

The National Centre for Gynaecological Cancers, in partnership with the National Breast and Ovarian Cancer Centre, has entered into a contract with Australia’s Commonwealth Scientific and Industrial Research Organisation, acting through Australian E-Health Research Centre to pilot test items developed for the gynaecological cancers data set specifications.

¹ http://meteor.aihw.gov.au/content/index.phtml/itemId/344846