Vision and Objectives

The unique characteristics of AYAs living with cancer require access to oncology services which provide expert cancer care and consider AYAs’ age-specific and complex psychosocial and physical needs. However, in many parts of the world, AYAs with cancer face inequities of care as they are poorly served by the traditional dichotomy of the integrated paediatric (“patient/family-centered”) care services versus dispersed (“disease-centered”) adult oncology services. Up to half of AYA with cancer report unmet informational and service needs, impacting their direct (survival rates) and indirect (long term effects and mental health) recovery to participate in the society.

STRONG AYA seeks set up a value-based healthcare research ecosystem, with AYA patient involvement at its core, in order to develop data-driven, interactive policy and visualization tools that bring, in co-creation with all stakeholders including patients, novel insights into AYA healthcare. At its core, STRONG AYA will

• Equip AYAs with cancer with the data to better optimise their healthcare, support shared and personalised decision-making between AYA and health care providers.
• Enable AYA healthcare quality monitoring by monitoring access to AYA nurse specialists, fertility consultants, and social workers for discussion about work etc.
• Establish benchmarking between the different countries on these key performance indicators.
• Enhance AYA research data sharing.
• Provide real-world evidence to all important AYA oncology decision-makers.
• Share insights with policy-makers to address and reduce inequalities across the entire disease pathway of different cancers in AYAs in different regions in Europe.