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.

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.

The main objective of this project is to establish a Data Space for rare cancers (RC) that will make possible the re-use of existing multisource health data (cancer registry data, national registries, data from biobanks etc.) across European healthcare systems leveraging emerging interoperability technologies and AI approaches. The realized "Rare Cancer Data Ecosystem" is expected to improve the quality and the organization of RC patients care, and to increase knowledge on rare cancers advancing health research, so that all patients have equal access to high quality specialist care. The project approach will be experienced in the framework of the European reference network for rare adult solid cancers (EURACAN).

The introduction of immune checkpoint therapy for Non-Small Cell Lung Cancer (NSCLC) has improved clinical outcomes. However, due to primary or secondary resistance, only a minority of patients show long term responses, leading to exploration of a multiplicity of new agents and combinatorial strategies. Due to lack of biomarkers that can predict response, many patients are submitted to treatments that will not have clinical benefit. A thorough understanding of the biological processes causing resistance to immunotherapy in NSCLC could facilitate informed personalised therapy choices. This requires a multifactorial assessment of the tumour microenvironment, a complex and dynamic milieu, encompassing the majority of tumour-host interactions. SPACETIME brings together interdisciplinary expertise to achieve a superior understanding of the spatial and temporal tumour-host co-evolution, and drive translation into predictive biomarkers for precision immunotherapy. We will integrate spatial proteomics, transcriptomics, metabolomics and glycomics to analyse patient biopsies from early stage to metastatic disease, complemented with tissues from representative mouse models to cover the developments early after tumour initiation. Environmental and systemic factors that may influence this co-evolutionary process will be included to identify potential risk factors for therapy resistance. Ex-vivo, in vitro and in vivo assays will bring functional understanding of immune resistance mechanisms and identify key cellular interactions and therapeutic targets. This will be brought together by advanced computational approaches, to define spatial signatures, that will lead to a limited panel of potential prognostic and/or predictive markers for immunotherapy. Supported by engagement of key stakeholders, SPACETIME will pave the way towards development of a spatial signature test for patient stratification, to sidestep immunotherapy resistance and improve survival for NSCLC patients.This action is part of the Cancer Mission cluster of projects on “Understanding (tumour-host interactions)”.

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.