WP leader: Italian National Institute of Health, Italy (Roberta De Angelis)
WP7 general objective is to enhance population-based cancer information systems to better support evidence-based comprehensive cancer care, with a focus on patterns of care, costs of care and survivorship. IPAAC JA should foster this enhancement, both at local and national level, and ensure in parallel a high level of standardisation and comparability in the procedures to collect and process data among the participating MS at EU level.
Two are the proposed directions of action:
- To pilot the integration of cancer datasets with information from electronic administrative and health data flows on the entire pathway of care of cancer patients (from population-based screening to diagnosis to care, including survivorship, quality of life and costs) in order to achieve an agreement on the best data sources and procedures to advance the current registries datasets (taking into account local conditions and legislation)
- To expand the information available from the current registries datasets to promote the use of more informative and innovative epidemiological indicators at EU MS level on cancer prevalence and survivorship
Unmet information needs include clinical determinants of prognosis and care, patterns of care and related cost profiles, late/adverse sequelae and second cancers. Priority will be given to already agreed indicators at EU level such as those in ECHIM or in other set of validated indicators of cancer care performance assessment (based on existing definitions by OECD, WHO, Expert Group HSPA on Health Systems Performance Assessment).
Connection with other iPAAC WPs is also relevant and appropriate. In particular WP-7 activities should include data and indicators relevant for the assessment of quality of care and appropriateness/efficiency of pathways (in connection with WP-10 and others according to the final structure.