Accelerating research for lung cancer: Getting the data out there

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Dunn, Nathan
Guan, Tracey
Negrello, Theresa
Cossio, Danica
Francois, Gary
Lehman, Margot
Philpot, Shoni
Sanmugarajah, Jasotha
Windsor, Morgan
Griffith University Author(s)
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Date
2023
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Gold Coast, Australia

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Abstract

Introduction: The development of Research ready lung data by Cancer Alliance Queensland (CAQ) provides a standardised, enhanced, curated dataset to investigate outcomes for Queenslanders diagnosed with non-small cell lung cancer (NSCLC). Methods: The Research ready lung data was drawn from the Queensland Oncology Repository and contains information on 40,941 Queenslanders diagnosed with NSCLC between 1 January 2000 and 31 December 2019. Incidence and mortality data were combined with surgical, radiation therapy, and intra-venous systemic therapy treatment data from both public and private hospitals and treatment facilities. Eighth edition staging is available from 2011 onwards, assigned from a combination of pathological and clinical information using novel techniques including natural language processing. A data dictionary has been developed to guide researchers’ understanding of the data. Additionally, a sample dataset accompanies the dictionary which allows researchers to visualise rows of raw data. Learnings: The clinical and research community has identified there is much waste, duplication, and inefficiency in research and governance processes; the Research ready lung data has been developed in response to this need. Achieving balance between usability and accessibility is difficult when seeking to include enough information to be useful, while maintaining individual patient privacy and preventing re-identification. We believe we have achieved this balance. The pre-defined data are transparent and pulled together in a convenient format with a streamlined governance process for data access, transfer and publication. The Research ready lung data has already enabled investigation into whether Queenslanders with NSCLC receive guideline-concordant care and forms the basis for ongoing quality assurance reporting. Contribution: This initiative reduces the burden of generating bespoke datasets for individual projects while maintaining patient privacy, accelerating research opportunities, and improving efficiency. CAQ is continuing this initiative by developing research ready datasets for multiple cancers, with colorectal up next.

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Respirology

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Supplement: Australian Lung Cancer Conference 2023, 15–17 Feb 2023

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28

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S3

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Biomedical and clinical sciences

Health sciences

Science & Technology

Life Sciences & Biomedicine

Respiratory System

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Dunn, N; Guan, T; Negrello, T; Cossio, D; Francois, G; Lehman, M; Philpot, S; Sanmugarajah, J; Windsor, M, Accelerating research for lung cancer: Getting the data out there, Respirology, 2023, 28 (S3), pp. 8-8