Colorectal cancer databases and registries in Australia: what data is available?

BackgroundMultiple cancer registries in Australia are used to track the incidence of cancer and the outcomes of their treatment. These registries can be broadly classed into a few types with an increasing number of registries comes a greater potential for collaboration and linkage. This article aims to critically review cancer registry types in Australia and evaluate the Australian Cancer registry landscape to identify these areas.MethodsA systematic review was performed through MEDLINE, EMBASE and Cochrane Library, updated to September 2022 using a predefined search strategy. Inclusion criteria were those that only analysed Australian and/or New Zealand based cancer registries, appraised the utility of cancer outcomes and/or incidence registries, and explored the utility of linked databases using cancer outcomes and/or incidence registries. The grey literature was searched for all operating cancer registries in Australia. Details of registry infrastructure was extracted for analysis and comparison.ResultsThree thousand two hundred and sixteen articles identified from the three databases. Twelve met the inclusion criteria. Twenty‐eight registries were identified using the grey literature. Strengths and weaknesses of Cancer Outcome Registries(COR) and Cancer Incidence Registries(CIR) were compared. Data linkage between registries or with other healthcare databases show great benefits in improving evidence for cancer research but are challenging to implement. Both registry types utilize differing modes of administration, influencing their accuracy and completeness.ConclusionOutcome registries provide detailed data but their weakness lies in incomplete data coverage. Incidence registries record a large dataset which contain inaccuracies. Improving coverage of quality outcome registries, and quality assurance of data in incidence registries is required to ensure collection of accurate, meaningful data. Areas for collaboration identified included establishment of defined definitions and outcomes, data linkage between registry types or with healthcare databases, and collaboration in logistical planning to improve clinical utility of cancer registries.

Section: Cancer Incidence Registry(cir) Evaluationmentioning

confidence: 99%

Cancer incidence and outcomes registries in an Australian context: a systematic review

Chong,

Maida,

Ong

et al. 2023

“…4 They can, however, provide further information when information from administrative data sets is linked to the minimum dataset collected through a CQR as exemplified by the article on colorectal cancer databases in this issue of the Journal. 5 There are many local examples of CQRs that have led to improvement in patient care as a result of their primary reporting function. The Australian Orthopaedic Association National Joint Replacement Registry identified a higher-than-expected reoperation rate for a hip resurfacing prosthesis.…”

Section: Introductionmentioning

confidence: 99%

“…Administrative datasets have been shown to lack sensitivity and have high false positive rates when interrogated about surgical complications and compared to a purposefully collected registry dataset 4 . They can, however, provide further information when information from administrative data sets is linked to the minimum dataset collected through a CQR as exemplified by the article on colorectal cancer databases in this issue of the Journal 5 …”

Section: Introductionmentioning

confidence: 99%

Clinical quality registries: urgent reform is required to enable best practice and best care

Brown

Ahern

MacCormick

et al. 2022

Clinical quality registries (CQRs) systematically collect data on pre‐agreed markers of quality of care for a given procedure, that can be reliably and reproducibly defined and collected across multiple sites. Data is then risk adjusted, and comparisons may be used to benchmark performance. These data then inform quality improvement initiatives. CQRs require an overarching independent governance structure and surety of funding. CQRs rely upon whole of population enrolment to minimize the risk of selection bias, and often rely on the secondary use of sensitive health information, meaning that the processes for ethical review and consent to participation are different to clinical trials. Despite several local examples of CQR improving practice in Australia and Aotearoa New Zealand, providing substantial cost–benefit to the community, there remain significant barriers to CQR implementation and functions. These include the difficulty of accurate data capture, lack of a fit for purpose ethical review system, the constraints of existing Qualified Privilege legislations and the need for protected funding. Whilst the Australian Government has released a 10‐year strategy for CQR reform, and the Aotearoa New Zealand Government has included registries in the planned Health New Zealand reforms for the public sector, we believe more urgent implementation of strategies to overcome these barriers is needed if CQRs are to have the impact on quality of care our Communities deserve.

“…12 One of the challenges of investigating the relationship between cancer stage at diagnosis and socioeconomic disadvantage on a population level is the relative lack of detailed staging information in population-based cancer registries, which could explain why findings are inconsistent among different data sources. 13,14 Rather than information derived from individual patients, arealevel indices are frequently used to capture relative socioeconomic advantages or disadvantages. Within a certain geographic area, these indices are based on an aggregate of various measures, such as average household income, rate of unemployment, the highest level of education and number of unskilled workers.…”

Section: Introductionmentioning

confidence: 99%

“…found that stage at diagnosis did not fully account for differences in survival by socioeconomic status 12 . One of the challenges of investigating the relationship between cancer stage at diagnosis and socioeconomic disadvantage on a population level is the relative lack of detailed staging information in population‐based cancer registries, which could explain why findings are inconsistent among different data sources 13,14 …”

Section: Introductionmentioning

confidence: 99%

Socioeconomic disadvantage and its impact on colorectal cancer in Australia: a scoping review

Tham

Skandarajah

Hayes

2022

Self Cite

Background: Social disparities in cancer survival have been demonstrated in Australia despite a universal healthcare insurance system. Colorectal cancer is common, and reasons for survival disparities related to socioeconomic status need to be investigated and addressed. The aim is to evaluate the current Australian literature concerning the impact of socioeconomic status on colorectal cancer survival and stage at presentation. Methods: A systematic search of PUBMED, EMBASE, SCOPUS and Clarivate Web of Science databases from January 2010 to March 2022 was performed. Studies investigating the impact of socioeconomic status on colorectal stage at presentation or survival in Australia were included. Data were extracted on author, year of publication, state or territory of origin, patient population, other exposure variables, outcomes and findings and adjustments made. Results: Of the 14 articles included, the patient populations examined varied in size from 207 to 100 000+ cases. Evidence that socioeconomic disadvantage was associated with poorer survival was demonstrated in eight of 12 studies. Evidence of effect on late stage at presentation was demonstrated in two of seven studies. Area-level measures were commonly used to assess socioeconomic status, with varying indices utilized. Conclusion: There is limited evidence that socioeconomic status is associated with late-stage at presentation. More studies provide evidence of an association between socioeconomic disadvantage and poorer survival, especially larger studies utilizing less clinically-detailed cancer registry data. Further investigation is required to analyse why socioeconomic disadvantage may be associated with poorer survival.