Lung cancer is the fourth most common cancer and the leading cause of cancer death in Australia.¹ To address this burden, benchmarking in cancer care can be facilitated through clinical quality registries. In Sweden, benchmarking through a rectal cancer registry showed that the Swedish postoperative mortality rate, local recurrence rate and cancer-specific survival rate were comparable to data from most centers of excellence worldwide.² As shown in the Danish Lung Cancer Registry (DLCR) that collects lung cancer cases confirmed by tissue diagnosis or completed treatment, the daily or annual reporting of feedback to surgeons resulted in remarkable improvements in the 1- and 2-year postoperative survival times, 30-day postoperative mortality and waiting times for lung cancer patients.³

In the real-world setting, the cancer registry for Southern Portugal and Madeira Islands, which is 1 of the 4 regional cancer registries in Portugal, showed that the survival benefit with nivolumab was substantially greater for non-small cell lung carcinoma than for squamous cell carcinoma.⁴ As these patients had stage 3B or 4 disease and had progressed on previous chemotherapy treatment, had poor expected outcome with available treatment options and had a life expectancy of at least 3 months, the results can be used to inform the government to adjust reimbursement policies to maximize the public health benefit.⁴

In Australia, a clinical quality registry is defined by the Australian Commission on Safety and Quality in Health Care as an organization which systematically monitors the appropriateness and effectiveness of health care, within specific clinical domains, by routinely collecting, analyzing and reporting health-related information.⁵ To drive improvement in lung cancer care in Australia, a pilot lung cancer clinical quality registry, The Victorian Lung Cancer Registry Pilot, was established in July 2011 in Victoria, Australia, aiming to reduce variations in treatments and outcomes, to improve compliance with best practice guidelines and to enhance the understanding of those factors predicting treatment outcomes in lung cancer care.⁵ To set up the registry, a governance structure was established with consumer representation and relevant expertise to provide strategic direction and oversight. An expert consensus panel was assembled to consider available evidence around appropriate quality indicators. Performance indicators were defined with a data dictionary and specifications to ensure that the data collected was consistent and accurate. A strategy was developed for the systematic capture, storage and analysis of the data. Specifically, a web-based portal for data entry, a secure mechanism for data transmission, a robust system for maintenance of data privacy and security, and data management and analysis strategies were established. Also, regular reports were generated for stakeholder institutions with data distributed to clinicians, research and ethics departments, quality improvement centres and hospital governance.

Prof. Rob Stirling, The Alfred Hospital, Monash University, Melbourne, Australia, further elaborated that the data collected was specifically framed to address the 6 pillars of quality of care: safety, timeliness, efficiency, evidence-based, patient-centred and access equity. Data recorded by clinicians was collected and transferred to a clinical quality registry. The data was then risk adjusted, analyzed, benchmarked and reported back to stakeholder participants. This feedback allowed stakeholders to evaluate their patterns of care, identify gaps in care, understand their performance in relation to peer providers and therefore develop innovation for servicing.

To best represent efficiency, safety, patient-centred care and evidencebased care, performance indicators were selected based on literature review and clinical practice guidelines.⁵ Examples in each of these domains include: Efficiency – resection within 14 days; Safety – 30-day mortality following a resection; Patient-centred care – the availability of supportive care screening documentation within the medical record; Evidencebased care – referral for palliative care within 8 weeks of diagnosis. Prof. Stirling emphasized the benefit of having a structured registry to identify significant opportunities for service and quality improvement. “We feel that the lung cancer registry provides a very effective tool for driving and monitoring quality improvement across this complex system. We also believe that comprehensive descriptions of real-world disease and patterns of care will enrich further research around lung cancer management,” concluded Prof. Stirling.