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 in formation on NHISSC is available at http://www.aihw.gov.au/committees/nhissc/index.cfm
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 DSSs 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 (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. This work is currently being finalised.
Once finalised, the Cancer (clinical) Date Set Specification and definitions will be forwarded to the National Health Information Standards and Statistics Committee for endorsement. It is anticipated that this will be in the first half of 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.
Bio-specimen 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 currently being finalised and it is anticipated that the new DSS will be submitted to NHISSC in the first half of 2010.
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. This work is still in its early stages and is progressing.
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 is currently investigating the best approach to the development of a DSS for adolescents and young adults with cancer.
Gynaecological Cancers Data Management Project
The National Centre for Gynaecological Cancers, in partnership with the National Breast and Ovarian Cancer Centre, is beginning to pilot test items developed for the gynaecological cancers data set specifications. Further details
Structured Pathology Reporting
Background
The NSW Oncology Group has identified Structured Pathology Reporting as a high priority for improving clinical decision support. Unlike the United Kingdom or the United States, there is no structure for development and dissemination of structured (or synoptic) pathology reports against a national standard for cancer in Australia. There is limited evidence or research to demonstrate that structured pathology reports are beneficial to clinical treatment, clinical decision making or that they reduce workload. However, clinicians agree that it is good practice to have guidelines, standard report formats and minimum data items.
A Round Table on the 28th June 2007 was convened by the Cancer Institute NSW, in conjunction with The Royal College of Pathologists of Australasia (RCPA) and Cancer Australia. The subject was the use of structured pathology reports in cancer, and the aims of the Round Table were to discuss clinical drivers for structured requests and reporting; identify current projects and practices in each state, and to identify a national pathway for the development, review and publication of agreed voluntary standards for structured pathology reports for each type of cancer.
All who were present at The Round Table agreed that structured reporting of cancer cases in anatomical pathology and haematology is likely to contribute to better cancer control through improvements in:
- Clinical management and treatment planning
- Cancer notification, registration and aggregated analyses
- Research.
The Cancer Institute NSW secured funding in February 2008 from the Dept of Health & Ageing (Quality Use of Pathology Programs) to work with the RCPA and Cancer Australia to develop 6 reporting protocols (lung, melanoma, breast, colorectal, lymphoma and prostate) and a toolkit in partnership with national clinician and pathologist organisations. The toolkit or framework documents and the six cancer protocols have been developed and will be posted to the RCPA website.
A second round of funding from the Dept of Health & Ageing (Quality Use of Pathology Programs) has been applied for that will promote and expand the use of structured reporting of cancer. The planned program of work will include developing further protocols in conjunction with international bodies; undertaking a national program of education on the developed cancer protocols (breast, melanoma, lung, lymphoma, colorectal and prostate); and developing a recommended report format in which to report the structured information from the protocols. This program of work will be overseen by the Royal College of Pathologists Australasia with clinical consultation from the Cancer Institute NSW, and in conjunction with Cancer Australia.
For more information on the current project visit the RCPA website:http://www.rcpa.edu.au/Publications/StructuredReporting.htm
or contact the Project Manager for Structured Pathology Reporting:
Meagan Judge
Project Manager
Structured Pathology Reporting for Cancer
Tel: 02 83565854
Email: meaganj@rcpa.edu.au