Gynaecological cancers data management project

For gynaecological cancers, there is currently insufficient national data relating to stage of cancer at diagnosis, treatment information, recurrences and other cancer outcomes. This reduces our ability to monitor cancer outcomes and look at areas where improvements could be made in service delivery.

Clinical data set specifications for gynaecological cancers have been developed to enable better monitoring of the quality of treatment and care women receive and inform future service development. This work is currently in its pilot stage.

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Background to the project:

In 2008, the National Centre for Gynaecological Cancers and the National Breast and Ovarian Cancer Centre (NBOCC) worked collaboratively with key professional groups to identify 14 gynaecological-specific clinical data items for cervical, endometrial and ovarian cancer (the three most common gynaecological cancers in Australia). In addition, this project developed a data dictionary to ensure that the data items are collected in a consistent way that will allow data on these cancers to be compared and analysed nationally.

The National Clinical Data Set Specifications for Gynaecological Cancers details the minimum information that should be collected – by hospitals, cancer centres, and cancer screening programs – about each person’s cancer and the treatment and care they receive. This information will enable cancer agencies, health professionals and policy makers to monitor cancer services, assess the quality of care and treatment people receive, and plan services for the future.

These data items complement the data items that will be collected under the Cancer (clinical) data set specification, (originally developed under aegis of the National Cancer Control Initiative), and are consistent with the data items developed by the International Federation of Gynaecologists and Obstetrics (FIGO).

Progress to date:

Australia’s Commonwealth Scientific and Industrial Research Organisation, acting through Australian E-Health Research Centre, has been contracted by Cancer Australia to pilot test the collection of the items. This work is nearing completion and a report will be available before the end of 2010.