Cancer Cost Profile by Phase of Care in Cancer Registry

Key Contextual Factors

• The approach proposed allows to estimate the amount of resources allocated to people living with cancer diagnosis in three phases of care reflecting clinical patterns: initial (diagnostic and treatment), monitoring (long-term follow-up) and final phase (3,4). It has been successfully implemented in Italy and is replicable in countries/regions where population-based cancer registry data are available and linkable at individual level with data on costs of care.

The implementation faces major challenges:

• Variability in population coverage of data sources and their temporal extension and consistency.
• Variability of health systems impact on the data collection.
• Heterogeneity of classification systems and cost definitions.
• Legal issues when accessing data.

Key Components/Steps

Formal steps:

• Ethical Committee
• GDPR application procedure

Operational steps:

• Recognition of health data sources containing costs information
• Adherence to study protocol
• Deterministic record linkage among the data sources
• Adaptation of calculating algorithms to the country specific data
• Data sharing or carrying out analyses by country’s referent
• Discussion of results with clinicians and health care planners

Main Impacts / Added Value

• Cost indicators represent a key information for policy makers in order to better allocate resources needed for cancer care. The approach proposed here allows to estimate the distribution of health care budget according to different health care service components, phase of care and patients’ characteristics that are proved to be cost drivers, i.e. stage at diagnosis and age (3), by using information at individual level (micro-data).
• Attempts to adapt the Epicost approach have been implemented in Belgium, Norway, Poland, Croatia, Spain: in the latter two countries the adjustment was unsuccessful, as data on individual costs were not available. In the first three implementation is ongoing.

Lessons Learned

Availability of cancer registries and other health databases collecting data on individual basis is a prerequisite.

• Clear legal framework and procedures to access health data are essential.
• Willingness of data providers as well as competent authority is critical.

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