Australian cancer registry data

/in ,

An article published today and available free in The Medical Journal of Australia by Louise Gordon of QIMR provides an insight into another aspect of the Australian healthcare system in addition to the controversial issue of out-of-pocket medical costs.

The findings are based on 452 cancer patients diagnosed from Nov 2010- Nov 2011 identified via linkage to the Queensland Cancer Registry. Melanoma accounted for 44% of cases, prostate 25%, breast 19%, colorectal 7% and lung 5%. The costs for medical services and pharmaceuticals were collected for the 2-year period following diagnosis via data linkages with Medicare.

The power of data linkage is clear, but in 2018, how useful is information on services performed prior to Dec 2013?

All cancers, except basal and squamous cell carcinomas of the skin, are notifiable diseases in Australian states and territories. This means there is legislation in each jurisdiction that requires hospitals, pathology laboratories and various other institutions to report all cases of cancer to their central cancer registry.

An agreed minimum data set collected by these cancer registries is supplied annually to the Australian Institute of Health and Welfare (AIHW), where it is compiled into the Australian Cancer Database (ACD). The ACD currently contains data on all cases of cancer diagnosed from 1982 to 2012 for all states and territories, and for 2013 cases for all jurisdictions except NSW.

However, the current data set does not collect any genetic information at tumour-level, and this needs to be addressed urgently to ensure the ongoing value of the data.

Further to this, the introduction of an electronic health record for every Australian, unless they opt out, by the end of 2018 should be the catalyst for an overhaul of the existing cancer registry infrastructure to enable faster availability of collected data to researchers and policy makers.

Cancer Screening Programs

/in , ,

Monitoring reports for two of Australia’s government-funded, population-based national cancer screening programs were recently released by the Australian Institute of Health and Welfare (AIHW).

The report on the National Cervical Screening Program (NCSP) for women aged 20-69, measured incidence and mortality at 9–10 new cases, and 2 deaths, per 100,000 women, respectively. These rates have remained steady since halving between the introduction of the program in 1991 and 2002. The 2015-2016 report card however, shows two measures trending in the wrong direction over the past 3-5 years, with participation rates falling from 58% to 56%, and pap tests with no endocervical cells rising from 21 to 24%.

The impact of the National Human Papillomavirus (HPV) Vaccination Program is in evidence with a decline in the rate of detection of high-grade abnormalities for women under 30 as girls who were vaccinated against HPV move into the screening cohort.

Following a review of the NCSP by the Medical Services Advisory Committee (MSAC Application 1276) in 2014 an alternate Cervical Screening Test and pathway were recommended. The new NCSP commenced on 1 December 2017 with a five-yearly HPV test replacing the two-yearly Pap test. More than 99% of cervical cancers are caused by HPV, which includes squamous cell and adenocarcinoma. Neither the Pap nor the HPV test effectively detect the remaining <1% of neuroendocrine or small cell cervical cancers.
HPV vaccinated women are still at risk of cervical cancer from the 30% of oncogenic HPV types other than 16/18 (covered by the vaccine) known to cause cancer and hence, also need to participate in regular cervical screening.

Between January 2015 and December 2016, the participation rate in the National Bowel Cancer Screening Program was 41% of the eligible target population aged 50-74 years, which was slightly higher than the 39% recorded in the previous 2-year rolling period (2015-16). Of those who had participated in an earlier round, those returning for subsequent screening was 77%.

In 2016, approximately 8% of those screened returned a positive screening test. Of those who received a positive test, 68% had reported a follow-up diagnostic assessment.
Since the program commenced in 2006, data available for participants who have undergone a diagnostic assessment, reveal 1 in 30 have been diagnosed with a confirmed or suspected cancer, and 1 in 7 have had an adenoma detected.

The roll-out of biennial screening for those in the target group is expected to be completed by 2020.

Screening programs are funded by Federal and State Governments. In 2015-16, this amounted to $84 million for the cervical program and $56m for bowel. The reports may be downloaded from the AIHW website.

Remember the 10% MBS-PBS dataset?

/in ,

Update

The final report of the Productivity Commission inquiry into Data Availability and Use has been released. One of the Government’s responses is to create an Office of the National Data Commissioner, whose role is designed to implement an efficient data sharing framework within government.

Background
Back on 1 August 2016, the Department of Health published information on the Australian Government’s central catalogue of public data, data.gov.au, for a 10% sample of individuals who had made a claim for payment of Medicare Benefits since 1984, or Pharmaceutical Benefits since 2003. This was for research purposes in the public interest, and followed recommendations made by the May 2016 Senate Select Committee on Health’s Sixth Interim Report (Big Health Data: Australia’s Big Potential). The required precautions were considered to have been taken with regard to de-identification and privacy at the time.

Read more

National Cancer Data in one Place!

/in ,

Have you seen the National Cancer Control Indicators (NCCI) website?

It is Australia’s first single location of cancer data.

An initiative of Cancer Australia, the national cancer control agency, this data resource launched last November. The framework above shows the sources and type of data collected. The Australian Bureau of Statistics (ABS) and Australian Institute of Health and Welfare (AIHW) feature prominently as data custodians.

Data is updated dynamically on the site as it becomes available and can be displayed as required using interactive features. The information is organised around the cancer journey from Prevention, Screening, Diagnosis, Treatment and Outcomes. Two further domains, Research and Psychosocial Care, are currently under development.

The site acknowledges that there is a large degree of variation in the availability and completeness of data for some cancer domains, and for certain tumour types. The data is still also relatively old, with the recently released National Cancer Stage at Diagnosis analysis dating to 2011. Despite these caveats, which will improve moving forward, it is a fantastic initiative and invaluable to policy makers, researchers and reimbursement submission writers!