How do they work

Our ecosystem consists of two key components:
1. People and organisations that are active in our work (‘Actors’) with varying competencies, relationships and resources;

2. An digital infrastructure that promotes the activities of these actors. In Strong-AYA we are considering our infrastructure in terms of ecosystems, that generate a stronger culture of successful and sustainable working and integrate traditional clinical, epidemiological and data science processes with patient-centred data

  • Our ecosystems will exist at two levels:
  • The national level, providing improved review of (individual, aggregated) data and reports from STRONG-AYA organisations within participating countries. This data is integrated with and consistent with the existing (local and national) authentication and authorization laws, regulations and infrastructures.
  • At the pan-European level, across all our currently involved nations and hopefully future partner countries. This provides reports, tools and educational material made possible by federated approaches, which share information derived without material data transfer.

Our ecosystems’ functions will include portals, for the purposes of:

  • Data collection and entry, by
  • Healthcare professionals (Clinical and genomic data) and
  • Service users (patient-reported outcomes, or PRO)

  • Data review and correction by:
  • Healthcare professionals (Clinical and genomic data) and
  • Service users (PRO and perhaps other data)

  • Analytical/Data visualisation by:
  • Healthcare professionals
  • Service users
  • Other stakeholders, such as policy-makers and patient advocates.

  • Our ecosystem will also provide tools, such as:
  • Software - apps to help those with permission to examine our research and data.
  • Services – provided at cost to external individuals or organizations wishing to use our resources, according to ethical and regulatory approval.