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.

This proposal for a European Cancer Patient Digital Centre (ECPDC) Information Portal, EU-CIP, addresses the information needs of cancer patients, survivors, relatives, and caregivers. EU-CIP aims to create a patient-centric cancer information portal that improves health literacy, empowers patients, and reduces inequalities in access to cancer care information across Europe. The EU-CIP primary goal is to improve quality of life and enhance cancer patient care by improving access to general and personalized knowledge, delivering comprehensive information on cancer prevention, early detection, diagnosis, and treatment options including risks, side effects and late effects as well as information on rehabilitation and management of recurrence and palliative care. EU-CIP will prioritise high-incidence cancers, those with poor prognosis, and paediatric cancers. A Common Library of Contents available to all Member States will be created and EU-CIP nodes will be deployed in 10 Member States. The Library of Contents will use information from evidence-based sources such as the Knowledge Centre on Cancer and the European Cancer Information Service, existing Cancer Information Portals, and European guidelines. A governance framework for scalable content creation and review processes supported by AI tooling will be established. The consortium partners, including several patient organisations, will ensure that the patients’ view is reflected in the content review and technology usability aspects. The EU-CIP Central and local nodes will be built in a modular fashion to allow integration with existing electronic health infrastructures. To align with the EU Cancer Mission goal to improve lives through prevention, EU-CIP will raise awareness about the Mission and Europe’s Beating Cancer Plan. Alignment with the Mission’s overall plans will be realized through collaboration with the EU funded projects of the related 01-01/01-02 calls.

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.

EUonQoL aims to develop, pilot and validate the EUonQoL-Kit, a patient-driven, unified system for the assessment of quality of life (QoL) based on evaluations and preferences of cancer patients and survivors. The EUonQoL-Kit will be developed from a patient perspective, administered digitally, available in the EU27 and Associated countries languages, and applicable in future, periodic surveys to contribute to the EU’s mission on cancer. At the core of the EUonQoL there is the adoption of a multistakeholder, co-design methodology, engaging patient representatives, healthcare professionals, administrators, policymakers, and citizens in all project related activities. Existing QoL tools will be reviewed, scoping all relevant sources. This review will be used in the context of the codesign consensus with stakeholders’ and patients’ preferences to identify gaps and establish all QoL dimensions that are relevant from the perspectives of patients, clinicians, and society. A multidisciplinary researcher panel, composed by the most talented experts, will develop the EUonQoL-Kit that will be validated in a pilot survey using digital data collection within month 24 of the project. A total of 4,000 cancer patients and survivors will be enrolled through a network of EU cancer centers. An analysis of factors potentially impacting on cancer patients and survivors QoL, will also be performed. Implementation and exploitation strategies, as well as the linkage with other Cancer Mission projects and actions will be explored to develop future periodic surveys. EUonQoL is composed by research institutions, cancer centers, as well as scientific, professional, and patient representative organizations involved in cancer research, all with extensive experience and robust scientific background in the development of self-report QoL measures.This partnership fuels the ambition of EUonQoL to translate QoL information into future changes in cancer care policy and clinical practice.

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.