The LUCAP infrastructure will comprise one central, secure database platform and be scalable to manage data from hundreds of treating centres across Australia. The platform will enable secure, web-based data entry and will integrate with local electronic medical records to minimise the burden of dual data entry.
Importantly, LUCAP will not be collecting 'new' data from patients directly, data will be collected from the systems already in place at participating hospitals and service providers, such as diagnosis date, diagnosis type, treatment pathway etc. The data will be collated and stored securely on a bespoke data platform housed on-premise at Curtin University in Perth, Western Australia. All data will be managed in accordance with the Operating Principles for Clinical Quality Registries. Data sets and metadata specifications will be standardised using data items specified in the National Health Data Dictionary.
From late 2022 to mid-2023, the LUCAP team led a group of clinicians, patient advocates, and researchers from Australia and New Zealand to complete a Delphi consensus process (read more about the process here) to determine clinical quality indicators relevant to thoracic oncology. These indicators will help benchmark the quality of care provided across hospitals, and will soon be applied to the pilot dataset currently being collected in Perth. Our collaborations with patients and other stakeholders – such as Lung Foundation Australia – will continue in the coming months as we develop the LUCAP annual reports, which will be based on these indicators.
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Example indicators for lung cancer care considered in LUCAP-led discussions for Australian benchmarking. We expect these to change with experience, feedback and as gold standard care changes.
Where appropriate, case-mix adjusted proportions of key measures will be presented after statistical adjustment for measures such as age, sex, lung function, smoking status, performance score, cancer stage and socioeconomic status. Multivariable linear regression models will determine the probability that the result is significantly different from the national mean. Data will be presented as a case-mix adjusted percentage and the results further illustrated as funnel plots.
Lung Foundation Australia will publish staged, progressive patient-centred reports. A robust outlier policy will be developed for treating centres with poor outcomes based on successful international quality improvement approaches.
Finally, all contributing centres will have access to a local, live dashboard of clinical quality indicators targets to facilitate continuous local service improvement.