Deliverables
Defining a Label for Data Quality and Utility
This report outlines how we define and measure the quality and usefulness of data, offering a structured framework for assessing dataset reliability. It builds on previous research, expert discussions, and a rigorous consensus-building methodology to develop a standardized approach to data labeling. To ensure a robust technical specification, a comprehensive systematic literature review and expert consultations were conducted, identifying 54 key dimensions of data quality. Through iterative expert evaluation, statistical validation, and prioritization, this list was refined to 12 core dimensions applicable to any data type and reuse purpose. For each of these dimensions, quantifiable metrics and scoring criteria were developed, ensuring broad agreement among experts from diverse data quality domains.
Evaluating Data Holders’ Readiness
This report presents the Data Holders’ Maturity Model, a framework to assess how well organizations manage high-quality data. It defines ten key dimensions with five maturity levels, guiding progression from lower to higher maturity. Typically, each organization completes a single assessment, but multiple assessments can be done if maturity varies across data domains (e.g., clinical vs. genomic data). Designed for long-term use, the model allows data holders to track and improve their maturity over time.
Understanding Stakeholder Training Needs for High-Quality Data
This report identifies the key training needs of stakeholders involved in data quality and utility. Through a detailed analysis, it highlights gaps in current knowledge and proposes a tailored educational curriculum to help professionals understand and apply the Data Quality & Utility (DQ&U) label. The findings will guide the development of training materials that ensure data is accurate, reliable, and fit for purpose.
Deliverable 2.1: QUANTUM Tool published in Zenodo Version 1.0 (beta) and software published in GitHub
This deliverable provides the first public beta release (v1.0) of the QUANTUM web-based labelling tool, implementing the project’s dataset-level data quality and utility assessment and the organisation-level maturity assessment. The tool operationalises the WP1 framework by supporting structured data entry, automated score aggregation using the QUANTUM weighting scheme, and the generation of reusable outputs for communication and reuse (e.g., visual labels and RDF and PDF reports of the three labels). To ensure transparency, traceability, and reuse, the source code is released via GitHub, and the corresponding version is archived in Zenodo to provide a citable software record.
Deliverable 3.1: Assessment report on the implementation process
This deliverable addresses all aspects of the implementation process of the QUANTUM Labelling Mechanism tool, where data holders provide insights on feasibility, barriers, facilitators, institutional preparedness, and governance, informing future international transferability and sustainability (T3.4). It also serves as feedback to improve the tool (WP2) and future versions of the quality, utility, and maturity specification (WP1). Deliverable 3.1 covers the approach, methodology, findings, and recommendations for the QUANTUM tool implementation, based on tasks 3.1, 3.2, and 3.3.
Deliverable 3.2 Guidelines and specifications for the implementation of the QUANTUM labelling mechanism
This deliverable aims to broach sustainability and transferability topics of the developed QUANTUM Data Quality, Utility and Data Holder Maturity label, issuing recommendations for the major stakeholders involved in its implementation (Data Holders, HDABs and the EC). These recommendations were developed through identification of key sustainability issues from previous work from Tasks 3.1-3.3, and surveys sent to HDABs and Data Holders in task 3.4. Through discussion with a dedicated Task Force, a first set of recommendations were outlined, to be validated and refined through two separate validation exercises based on a hybrid Nominal/Focus Group approach. Therefore, the document presents the consensual recommendations for the transfer and sustainability of the QUANTUM label resulting from T3.4 consensus exercises, concluding with proposals for future work, and open questions to be considered in the future.
Published Paper
Sánchez-García, Á., Proietti Mercuri, C., Schutte, N., Estupiñán Romero, F., Tellería-Orriols, C., Doñate-Martínez, A., Garcia-Gomez, J. M., Bernal-Delgado, E., & Sáez, C. (2026). Landscape analysis towards data quality and utility labelling in the European Health Data Space. European Journal of Public Health, ckag009.
Deliverable 4.2 Initial development of online training courses and workshops for different stakeholder groups
This deliverable presents the initial development of the QUANTUM
Academy’s online training curriculum, designed to enhance
stakeholders’ understanding and adoption of the Data Quality and
Utility (DQ&U) label within the European Health Data Space (EHDS).
Based on the learning needs identified in Deliverable 4.1, the
curriculum currently includes two modules with four courses. This
deliverable outlines the curriculum structure, validation process, and
roadmap for refinement, further development, and long-term
sustainability of the QUANTUM Academy.
Deliberable 4.3 Online training courses and workshops for different stakeholder groups
This deliverable provides a comprehensive overview of the development
and structure of the QUANTUM Academy curriculum. It outlines the
curriculum design, the validation process used to ensure the quality and
relevance of the course content, and the practical steps for accessing and
navigating the learning platform. In addition, the document describes the
overall course composition.
Deliberable 4.4 Sustainable community of practice and repository best practice resources
This report describes the implementation of the QUANTUM Task 4.3 repository within the European Health Information Portal, outlining its structure, content, and role in supporting access to health data quality, utility, and maturity resources. It also details key implementation choices and scope adaptations, including interoperability considerations and the development of a curated, portal-integrated knowledge hub supporting a broader community of practice in the European Health Data Space.
Deliberable 5.8 Project Forum
This deliverable reports on the objectives, implementation and results of the QUANTUM Project forum. The Project forum served as a key engagement platform for external stakeholders in the project. Four interactive online forums were organised to present and validate QUANTUM key deliverables with external stakeholders. The sessions included presentations, discussions and feedback gathering via interactive tools. The content and results of all four forum sessions are reported in this deliverable, as well as the impact they had on the QUANTUM work. The stakeholders highlighted, among other things, the need to manage data quality and utility label’s implementation burden especially on less mature organisations, to balance between excessive complexity that might undermine uptake and providing clear value for data users, and to balance standardisation with context‑specific notions of fitness for purpose.
Deliberable 5.9 Patients and citizens Forum
This deliverable reports on the objectives, implementation and results of the QUANTUM Patients and Citizens Forum. The Patients and Citizens Forum served as a dedicated engagement platform within the project, focusing on the perspectives of patients and citizens in relation to health data and its secondary use. A series of interactive online sessions were organised to introduce key concepts, explore levels of understanding, and gather feedback from participants. The sessions combined presentations, open discussions and interactive exchange formats to capture both structured input and experiential perspectives. In parallel to these structured activities, insights were collected through continuous engagement and listening activities conducted throughout the project. These included participation in conferences, workshops and public events, as well as contributions to international discussion formats such as the Patient Engagement Open Forum (2023, 2024 and 2025), enabling exchange with an international community of approximately 150 patient experts. In addition, social media listening activities were carried out to observe how QUANTUM and the concept of health data quality labelling are perceived and discussed across relevant audiences. The combination of structured sessions and continuous listening activities provided a broader evidence base for understanding patient and citizen perspectives. The content and outcomes of the forum sessions are presented in this deliverable, together with an analysis of the insights collected and their relevance for the QUANTUM project. Across the sessions and engagement activities, participants consistently highlighted the need for clear and accessible communication, improved contextualization of health data concepts, and greater transparency regarding the use of health data. Observations indicate that awareness of secondary use of health data remains limited, while interest and willingness to engage increase when information is presented in a clear and relatable manner. These findings underline the importance of aligning communication and engagement approaches with the needs and expectations of patients and citizens, as a key factor for supporting trust, understanding and the uptake of health data initiatives within the European Health Data Space (EHDS).
Deliberable 5.10 REcommendations of the mantainance and upgrade of the QUANTUM labelling mechanism
D5.10 reports on the dedicated session at the last QUANTUM meeting with the Advisory Board members aimed to discuss on the sustainability and transferability topics of the developed QUANTUM Data Quality, Utility and Data Holder Maturity label, issuing recommendations for the maintenance and upgrade of the QUANTUM labelling mechanism, based in Deliverable 3.2 “Guidelines and specifi cations for the implementation of the QUANTUM labelling mechanism as foreseen in the legislative regulation EHDSR article 78”.
Deliberable 5.11 Rome dissemination event
This deliverable provides an overview of the QUANTUM Dissemination Event held in Rome, focusing on building a high-quality health data ecosystem within the European Health Data Space. The event showcased the QUANTUM project’s progress, highlighting the development of data quality labels and their importance for enhancing trust and usability of health data. Key discussions covered data holder challenges, patient trust, and the technical specifi cations and implementation of the QUANTUM tool. The document summarizes main takeaways from each Work Package and overall considerations for future developments.
Deliberable 5.12 QUANTUM Final Event
This deliverable provides an overview of the QUANTUM Final Event. As the project approached its conclusion, the event served as the main forum for presenting QUANTUM’s achievements and fostering dialogue on the future of health data quality and utility in Europe.
