Project description
European network to improve healthcare system for adolescents and young adults with cancer
The EU-funded STRONG-AYA project will create a new European network to improve healthcare conditions for adolescents and young adults (AYAs) with cancer. AYAs with cancer are 15-39 years old individuals, who face age-specific issues of infertility, unemployment, financial problems, decreased quality of life, and need access to age-adjusted, high-quality healthcare. The project consortium will develop a healthcare research network with data-driven, interactive policy and visualisation tools to bring novel insights into AYA healthcare. The objectives include the development of national infrastructure for outcome data management and clinical decision-making within a pan-European ecosystem and establishing communication feedback for AYAs with cancer and the healthcare systems.
Objective
STRONG-AYA is a new, interdisciplinary, multi-stakeholder European network to improve healthcare services, research and outcomes for Adolescents and Young Adults (AYA) with cancer, defined as individuals aged 15-39 years at cancer diagnosis. AYAs with cancer form a unique group; they face age-specific issues (e.g. infertility, unemployment, financial problems) and decreased quality of life due to cancer and its treatment. Unlike dedicated healthcare and trials for pediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe. AYAs who are at the core of society and economy need access to age-adjusted and high-quality healthcare. AYA-care and research will benefit from collection and pooling of patient-centered data and collaboration among all stakeholders: patients, healthcare professionals, scientists, and policymakers. Our consortium of clinical and scientific leaders in AYA-care, data science and registries, European Cancer Organisation, Youth Cancer Europe and EORTC will build on previous initiatives and EU grants. Within STRONG-AYA we will set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools that bring, in co-creation with all stakeholders including patients, novel insights into AYA healthcare. The project objectives, include: 1) Development of a Core Outcome Set (COS) for AYAs with cancer; 2) Implementation of the COS in 5 national healthcare systems (FR, IT, NL, UK, PL) and establish national infrastructures for outcome data management and clinical decision-making and a pan-European ecosystem that also welcomes future European countries; 3) Disseminate outcomes and facilitate interactions between national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes, establish feedback loops for AYA cancer patients and the healthcare systems, and improve the reporting and assessment of outputs towards policy-makers.
Fields of science
Keywords
Programme(s)
- HORIZON.2.1 - Health Main Programme
- HORIZON.2.1.6 - Health Care Systems
Funding Scheme
HORIZON-RIA - HORIZON Research and Innovation ActionsCoordinator
1066 CX Amsterdam
Netherlands