Lopez T; Francisci S; Cacciani L; Andreotti A; DeSchutter H; Martos Jiménez C; Nygård M; Rodon Navarro E; Guzzinati S.
49th Annual Meeting of the Group for Cancer Epidemiology and Registration in Latin Language Countries (GRELL)
Porto, 27-30 maggio 2025
Abstract
Objectives: Within the framework of the Joint Action PreventNCDs, one of the tasks in WP8 (Task 8.4) aims to monitor the burden of cancer care on National Health Service (NHS) in terms of access to healthcare services and related costs. To this purpose, a preliminary step consists in mapping the healthcare data sources available in the NHS and accessible by population-based Cancer Registries through the administration of a questionnaire to participants. The current work reports on the development, feasibility and early findings of this survey.
Methods: A questionnaire was developed to map national health information systems, identify cost components of healthcare
expenditure, and understand national regulations on personal data management, addressing opportunities and constraints for collaborative research projects. A pilot phase was planned involving four countries: Norway, Belgium, Spain and Italy.
Results: To date, the pilot phase has been completed and a final version of the questionnaire is ready to be circulated to the other European countries involved in Task 8.4. Preliminary findings highlight that the method of recording service access is influenced by the healthcare system and funding, classification systems are not always convertible to the international standard and interoperability with data on screening programs and socioeconomic data is limited.
Conclusions: The results from the questionnaire contribute to assess the feasibility of monitoring access to the health care services and related costs in Europe. Moreover, the availability, accessibility and interoperability of healthcare data sources represent a preliminary step needed to develop pilot studies planned within the Task 8.4, focusing on costs estimation and care pathways for cancer patients. Additionally, the questionnaire will provide a reference framework for interpreting and comparing results, potentially enabling further investigations on healthcare access inequalities.