Understanding International Variation in Cancer-Specific 'Access to Diagnostics' Data and Steps Toward Cohesive Cancer Intelligence Frameworks: An International Cancer Benchmarking Partnership (ICBP) Study
Authors: Reguilon I. , Robinson D. , Butler J. , Harrison S. ,   ICBP Access to Diagnostics Working Group
Published: September 2018

Background: Robust and accurate data underpins cancer research, planning, control and comparisons; it shapes the policies and structures of health systems internationally. Access to diagnostics is crucial for timely cancer diagnosis and treatment planning as previous evidence has shown that delays in diagnosis can impact cancer outcomes. It is possible that differences in cancer outcomes internationally are a consequence of differing levels of access to diagnostic tests. By better understanding variation in this access, this relationship can be further explored. However, diagnostic data availability is not currently well documented. Aim: The primary goal of this exercise was to identify already existing routine or national datasets exploring 'access' variables relating to diagnostics for imaging and endoscopy tests. These access variables included capacity, use, workforce, location and financial factors, and where possible specific to the cancer population. Secondly, to address what high-income countries need to improve to fulfill the existing criteria for 'cancer intelligence frameworks', such as those set out by the National Health Service in England. Methods: Mixed methods including online searches and discussion with local contacts were used to explore key diagnostic data variables across the seven participating countries of ICBP phase 2 (Australia, Canada, Denmark, Ireland, New Zealand, Norway and the UK). Results: Gaps and inconsistencies in diagnostics data were identified in each country. These key issues make comparisons within and between countries challenging: inconsistent definitions, collection at different levels within a health system, and queries about the coverage, reliability, and linkage of data (especially for cancer) were raised. The usage and allocation of workforce is also poorly documented, and a lack of appropriate infrastructure raised as a key barrier to better collection of data. Currently, most countries do not have a centralised data collection organization, and there are no international or standardized definitions for the diagnostic data that should be collected and could be compared. Conclusion: Health data are disparately collected internationally, with little diagnostics data that can be linked to cancer populations. The data sources and gaps identified add weight to existing efforts to improve data collections and health service planning. International agreement on the key performance indicators, their definitions and how best to organize collected data are required to address gaps and enable robust comparisons. These definitions and an understanding of best practice will be useful for middle- and low-income countries who want to develop or start collecting cancer-specific data. Existing 'cancer intelligence' frameworks could be adapted for international use, but rely on the agreement and adoption of standardized definitions and metrics for the cancer population.