What is an Ecosystem?

Our STRONG-AYA ecosystems exist to generate a stronger culture of successful and sustainable working between researchers, clinicians, patients, policy experts and other stakeholders and to integrate traditional clinical, epidemiological and data science processes with patient-centred data.

The digital ecosystem includes portals through which STRONG AYA will be able to enter and view information and data to monitor, evaluate and compare outcomes, at a level befitting the user and their permissions as governed by legal and ethical considerations. This includes all stakeholders seeing relevant data. It also encompasses tools like apps that can optimise the knowledge gained by our data, such as predefined analyses based upon the core outcomes that STRONG AYA is evaluating in AYA cancer care.

  • Our ecosystems operate on the following principles:
  • Better use and re-use of our data, information and expertise – including ways to clean, integrate, package, analyse – improves our ability to learn from and apply the information that is shared among our stakeholders.
  • Data should be Findable, Accessible, Interoperable & Re-usable (‘FAIR’)
  • Cooperation, connection, inter-dependence and creativity bring together data science, clinical care, clinical research, epidemiology and service users