Periodic Reporting for period 1 - STRONG-AYA (THE STRONG-AYA INITIATIVE: IMPROVING THE FUTURE OF YOUNG ADULTS WITH CANCER)
Reporting period: 2022-10-01 to 2024-03-31
The STRONG-AYA project is a multi-stakeholder European network that aims to improve healthcare services, research, and outcomes for Adolescents and Young Adults (AYA) with cancer. AYAs with cancer face age-specific issues and decreased quality of life due to cancer and its treatment. Unlike pediatric cancer patients, AYA-specific healthcare services are scarce and vary across Europe. As a result, AYA-care and research will benefit from the collection and pooling of patient-centered data and collaboration among all stakeholders: patients, healthcare professionals, scientists, and policymakers.
The overall objectives of the project are to develop a Core Outcome Set (COS) for AYAs with cancer, implement the COS in five national healthcare systems, and establish national infrastructures for outcome data management and clinical decision-making. Furthermore, the project aims to establish a pan-European ecosystem that welcomes future European countries and facilitates interactions between national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes. The project intends to improve the reporting and assessment of outputs towards policymakers.
The project's scale and significance lie in addressing the lack of AYA-specific healthcare services across Europe and improving the quality of life of AYAs with cancer. The project aims to provide policymakers with novel insights into AYA healthcare and set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools in co-creation with all stakeholders, including patients.
The project involves a consortium of clinical and scientific leaders in AYA-care, data science and registries, European Cancer Organisation, Youth Cancer Europe, and EORTC. As an interdisciplinary project, STRONG-AYA recognizes the importance of social sciences and humanities in improving healthcare services and outcomes for AYAs with cancer. The project's emphasis on stakeholder engagement and co-creation highlights the role of social sciences and humanities in addressing the social and economic challenges that AYAs with cancer face.
The overall objectives of the project are to develop a Core Outcome Set (COS) for AYAs with cancer, implement the COS in five national healthcare systems, and establish national infrastructures for outcome data management and clinical decision-making. Furthermore, the project aims to establish a pan-European ecosystem that welcomes future European countries and facilitates interactions between national and pan-European stakeholders to develop data-driven analysis tools to process and present relevant outcomes. The project intends to improve the reporting and assessment of outputs towards policymakers.
The project's scale and significance lie in addressing the lack of AYA-specific healthcare services across Europe and improving the quality of life of AYAs with cancer. The project aims to provide policymakers with novel insights into AYA healthcare and set up a value-based healthcare research ecosystem to develop data-driven, interactive policy and visualization tools in co-creation with all stakeholders, including patients.
The project involves a consortium of clinical and scientific leaders in AYA-care, data science and registries, European Cancer Organisation, Youth Cancer Europe, and EORTC. As an interdisciplinary project, STRONG-AYA recognizes the importance of social sciences and humanities in improving healthcare services and outcomes for AYAs with cancer. The project's emphasis on stakeholder engagement and co-creation highlights the role of social sciences and humanities in addressing the social and economic challenges that AYAs with cancer face.
> Study Initiation Package
> Stakeholder Engagement Plan
> Stakeholder Engagement Plan
The development and implementation of a Core Outcome Set (COS) for AYAs with cancer is crucial in facilitating efficient and relevant standard data collection throughout the healthcare research ecosystem. This will increase the usefulness of these data for patients, researchers, healthcare professionals, and policymakers, ultimately improving the value of care for underserved young cancer patients. The expected outcomes of the project (2, 3, and 4) aim to achieve this goal.
The STRONG-AYA project will play a significant role in transforming AYA healthcare systems and research outcomes. By bringing together all stakeholders and integrating AYAs into the existing cancer care and research infrastructure in Europe, the project will create opportunities for AYA health outcomes research and utilization of outcomes data at both national and European levels. This transformation will be beneficial to all parties involved.
In essence, STRONG-AYA will establish a European network for AYA cancer that lays the foundation for the first true AYA value-based healthcare model in Europe. The project will be a catalyst for the transformation of AYA health outcomes data usage, resulting in a win-win situation for all stakeholders.
The STRONG-AYA project will play a significant role in transforming AYA healthcare systems and research outcomes. By bringing together all stakeholders and integrating AYAs into the existing cancer care and research infrastructure in Europe, the project will create opportunities for AYA health outcomes research and utilization of outcomes data at both national and European levels. This transformation will be beneficial to all parties involved.
In essence, STRONG-AYA will establish a European network for AYA cancer that lays the foundation for the first true AYA value-based healthcare model in Europe. The project will be a catalyst for the transformation of AYA health outcomes data usage, resulting in a win-win situation for all stakeholders.