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.

Cancer is the second leading cause of death in Europe with an expected increase of about 25% by 2035. A wide and unacceptable variability in terms of access to research, innovation and quality care exists between and within countries. Possible solutions are an increase in knowledge by funding research, and a more equitable transfer of what we already know to everyone. Comprehensive Cancer Centers and Comprehensive Cancer Care Networks may be the core of CCIs that deliver quality care and provide resources to improve and integrate care, research and education. Data already available confirm that the level of "CCI maturity" in Member States is widely different, from some countries lacking CCIs completely. A European initiative, implemented in all Member States, based on a capacity building programme (CBP), will help reduce inequalities, in the context of other actions ongoing, such as CRANE, JANE and UNCAN. CBP is a complex intervention that requires multiple and integrated actions delivered to all the relevant stakeholders. CBP will be designed with an inclusive approach, tailored to the baseline status, capable of creating a change and improvement in research and care, with greater integration between them, supported by an education programme. It will operate at various levels: Individuals, Institutions and Systems. The CSA will implement the following steps: define CCI Maturity Model including quality indicators; profile the CCIs in each MS and a few ACs in terms of CCI presence and levels of maturity; design tailored CBP interventions, giving priority to MSs without any CCI; deliver online training courses open to teams in all MSs and ACs, implement targeted onsite interventions; scale up and sustain development; disseminate, exploit and report results. The CSA will maximize impact by bridging with the work of ongoing EU cancer research projects. National focal points will be key informants in making the links between the CSA, the EC and MSs.

Cancer- healthcare, research and innovation face core common challenges, such as fragmentation of initiatives and distancing from important stakeholders, requiring coordinated solutions. These challenges are recognized in Horizon Europe’s Cancer Mission Implementation Plan and in Europe’s Beating Cancer Plan. The proposal Establishing of Cancer Mission Hubs: Networks and Synergies (ECHoS) represents a unique opportunity to coordinate R&I and Healthcare actions on cancer with policy-making processes creating transnational communication & collaboration networks aligned with Cancer Mission objectives. Experiences shows that the setup and implementation of innovative health solutions are more likely to be successful when a broad range of stakeholders and decision-makers from the public and private sectors are part of the process. By fostering the creation of National Cancer Mission Hubs (NCMHs) in member states and associated countries ECHoS will create the conditions for organized stakeholders and individual citizens to collaborate and engage in policy dialogues. The implementation of the Cancer Mission objectives will promote more resilient and people-centric healthcare and research systems. ECHoS will produce (i) general models and guidelines for the creation of sustainable NCMHs, (ii) a knowledge exchange programme to support development of NCMHs competences, (iii) impact models and training sets to help efficiently engaging with distinct stakeholders, (iv) a toolkit for synergies to help NCMH engaging in collaborative work with individual European Initiatives, (v) a business continuity model envisaging long-term sustainability of a EU network of NCMHs and (vi) a calendar of events to create awareness on NCMHs and to help closing the gap in citizens’ participation in cancer policy. In summary, ECHoS will create conditions for NCMHs to be Mission Cancer advocates in MS/AC and set the pace for the development of a transnational network of NCMHs in a second phase.

Patients' outcomes and experience of health care can be improved through the systematic capture and use of information from their perspective. We are currently not using all the information we could gain from Patients' outcomes and experience of health care can be improved through the systematic capture and use of information from their perspective. We are currently not using all the information we could gain from Patient-Reported Outcomes (PROs) to accurately measure value from the patient perspective. This is due to the lack of standardisation, interoperability and implementation of PRO measurement schemes. We urgently need a European scale network of outcomes data collection, analysis and evidence sharing to inform clinical practice and healthcare decisions. To tackle these issues, this public-private consortium brings together scientists, clinicians and professionals to design and set up independent, patient-centred, Health Outcomes Observatories (H2Os). With input from patients, providers and health care decision makers (health ministries, health insurers, regional health authorities, public health agencies, medicines regulators, health technology assessment agencies), these Observatories will collect data and provide information not only for individual clinical care, but also for evaluation of new technologies and for healthcare decision making. We will establish ethically and legally sound national, or regional, H2Os and run these initially in four countries for three diseases. Based on a hybrid model of federated and centralised data collection, management and analysis, these Observatories will operate under a governance model that will guarantee that data are protected under jurisdictional data protection law. H2Os will be connected to a pan-European umbrella H2O to facilitate interoperability, guide reproducibility in other countries, and promote the benefit of measuring and using patient-centred outcomes at regional, national, European and global levels.

PROTECT-CHILD is a project that aims to improve the outcomes of rare pediatric transplant patients by integrating multiple sources of high-throughput data from registries, hospital-based and public repositories, complying with ongoing initiatives such as the European Open Science Cloud (EOSC) and the European Health Data Space (EHDS). The project focuses on the co-design of a secure and privacy-preserving infrastructure, harmonization of data standards, and creation of a public/private infrastructure for assembling large datasets to improve clinical outcomes. The project involves top-level expertise from a consortium of technology specialists, data standardization experts, and High-Performance Computing (HPC) centers, as well as clinical experts, legal experts, patients’ representatives, and policy makers. The project is aligned with EHDS and General Data Protection Regulation (GDPR) principles and aims to empower secure and compliant processing, analysis, and sharing of sensitive personal data, including genomics, while preserving data privacy and security.