“Currently flying blind” Stakeholders’ perceptions of implementing statewide population-based cancer staging at diagnosis into the Western Australian Cancer Registry: a rapid qualitative process evaluation of the WA Cancer Staging Project

Abstract

Background Cancer stage at diagnosis is essential for understanding cancer outcomes, guiding cancer control activities and healthcare services, and enabling benchmarking nationally and internationally. Yet, most cancer registries in Australia do not routinely collect this data. This study explored key stakeholders’ perceptions of implementing cancer staging utilising Natural Language Processing and Machine Learning algorithms within the Western Australian Cancer Registry. Methods Perceptions of key breast and colorectal cancer stakeholders, including registry staff, clinicians, consumers, data scientists, biostatisticians, data management, healthcare staff, and health researchers, were collected. Prospective and retrospective qualitative proformas at two-time points of the Western Australian Cancer Staging Project were employed. The Consolidated Framework for Implementation Research was used to guide data collection, analysis and interpretation embedded in a Participatory Action Research approach. Data analysis also incorporated Framework Analysis and an adapted version of grading qualitative data using a visual traffic light labelling system to highlight the levels of positivity, negativity, and implementation concern. Results Twenty-nine pre-proformas and 18 post-proformas were completed online via REDCap. The grading and visual presentation of barriers and enablers aided interpretation and reviewing predicted intervention outcomes. Of the selected constructs, complexity (the perceived difficulty of the intervention) was the strongest barrier and tension for change (the situation needing change) was the strongest enabler. Implementing cancer staging into the Western Australian Cancer Registry was considered vital. Benefits included improved knowledge and understanding of various outcomes (e.g., treatment received as per Optimum Care Pathways) and benchmarking. Barriers included compatibility issues with current systems/workflows, departmental/higher managerial support, and future sustainment. Conclusions The findings aid further review of data gaps, additional cancer streams, standardising cancer staging and future improvements. The study offers an adapted version of a rapid qualitative data collection and analytic approach for establishing barriers and enablers. The findings may also assist other population-based cancer registries considering collecting cancer stage at diagnosis.

Collecting routine and timely cancer stage at diagnosis by implementing a cancer staging tiered framework: the Western Australian Cancer Registry experience

“…A Project Advisory Group (PAG) offers strategic advice and guidance to the project and oversees the expert tumour-specific clinical working groups that provide clinical expertise and assist with the development of business rules. Further information on the WA Cancer Staging Project has been published in our recent process evaluation, exploring key stakeholders’ perceptions of implementing cancer staging into the WACR [ 8 ]. The findings from our process evaluation highlighted major barriers to collecting cancer staging data, primarily stemming from a lack of standardisation and resulting in limited opportunities for benchmarking and fostering collaboration in cancer research and care.…”

“…Current approaches to the routine collection of cancer stage at diagnosis in PBCRs are constrained by the absence of standardised methodologies for collecting staging data, resulting in poor quality or incomplete data, and difficulties in accessing relevant data sources [ 4 , 7 , 8 ]. The collection of cancer stage at diagnosis in PBCRs has been found to encompass a variety of methods, relying on a wide range of data sources connected to routine data pipelines and collection processes – highlighting the diversity and complexity of how cancer stage information is gathered in PBCRs [ 4 ].…”

“…In clinical decision-making based on PBCR data, challenges arise in providing data linkages to evaluate treatment efficacy or compliance with clinical guidelines due to inadequate staging data [ 11 ]. Additionally, it hinders policy development for benchmarking progress or assessing cancer control initiatives, making it difficult to assess the effectiveness of interventions and impeding efforts for continuous improvement [ 8 , 11 , 12 ]. As a result, policymakers face difficulties in allocating resources judiciously, potentially leading to misguided decisions and resource imbalances in specific areas [ 13 ].…”

“…The 2011 STaR project, piloted by Cancer Australia in collaboration with the Australian Institute of Health and Welfare (AIHW) and state and territory cancer registries, is the sole national-level initiative for gathering staging data [ 17 ]. The staging data only captured those diagnosed in 2011, and the data from this pilot remains the most recent available [ 8 ]. It aimed to improve cancer outcomes by providing consistent and accurate staging information to healthcare professionals, researchers, and patients [ 18 ].…”

“…Our recent research recommends the use of a tiered framework to standardise cancer stage collection, addressing variable data maturity levels among PBCRs throughout Australia [ 4 , 8 ]. The tiered approach not only promotes data standardisation and comparability in registries using the AJCC TNM staging classification but also serves as an implementation strategy for capturing stage at diagnosis using existing data, allowing adjustments as data quality and completeness improve.…”