Ethics and Governance

STRONG AYA is guided by the most up-to-date scholarship on data security and ethics. We are crafting a governance model and legal framework, business architecture and quality assurance processes to ensure that the STRONG-AYA national ecosystems and the pan-European ecosystem have been designed in a way to empower patients to monitor their outcomes, create transparency of outcomes within the ecosystem and ensure long-term sustainability of the ecosystems to support European/national/regional/local cancer policy organisations to build appropriate AYA cancer services, which are not widely available at present.

• It will ensure compliance with European and each country’s legal and policy stipulations regarding the collection, use, and sharing of health outcomes data, including data protection, whilst balancing the needs for national specificity with the greater value and scalability from adopting common European governance models and legal frameworks, architectures, interoperability and outcomes standards.
• It will engage stakeholders to maximize the value for all involved parties, so that the increasing capture of health outcomes information leads to benefits to individual patients as well as growing collective insight into the extent of outcomes currently achieved and how to improve them, by increasing the evidence in favor of value-based healthcare models.
• It will define and promote sustainable business models at national and above-country levels with the aim of designing an environment in which additional countries and tumor types can easily be added later.

Advisory Boards

STRONG AYA is guided and advised by external experts and stakeholders to ensure excellence and transparency. Our advisory boards are:

• Scientific Advisory Board
• Ethics and Regulatory Advisory Board
• Patient Advisory Board