In short
QUANTUM aims to develop a labelling tool that will serve as a mechanism for researchers and healthcare innovators to assess the quality and utility of data and the maturity of the data holder, ensuring that their research and innovations are effective and provide value to society. The project will be testing this labelling mechanism across health data holders (such as healthcare organisations, health institutions and bodies, and research entities of the healthcare sector), to create value not only for them but also for data users and Health Data Access Bodies (HDABs) within the European Health Data Space (EHDS), and especially its infrastructure supporting the secondary use of health data (the reuse of health data for research, innovation, policy-making and regulatory activities): HealthData@EU.
Project description
Article 56 of the European Health Data Space regulation mandates labelling health datasets within the European Union (EU) to show their quality and usefulness. This initiative promotes transparency and trust in health data sharing across the EU for secondary purposes, benefiting research, innovation and healthcare systems as a whole. The QUANTUM project supports these goals, by creating a user-friendly labelling system for health datasets, ensuring they meet EU quality standards and making data assessment easier for holders and users. QUANTUM’s goal is to ensure that the HealthData@EU infrastructure benefits its users such as researchers and innovators, by providing them high-quality data. Using this data for research and innovation will bring the best outcomes for final beneficiaries.
In short, QUANTUM labelling mechanism would receive input from data holders’ management procedures (i.e., linkage, pseudonymisation, standardisation) and from their data quality procedures (e.g., quality checks) and would output a quality, utility and maturity label as part of the metadata record for that dataset.
The QUANTUM project has the following objectives:
- Conceptualise and develop a data quality and utility label in the context of a data holder maturity model (Work package 1)
- Design, develop, and test the labelling of the data sets’ quality and utility, and data holders’ maturity (Work package 2)
- Analyse implementation challenges to ensure the labelling process is transferable and sustainable as part of HealthData@EU (Work package 3).
- Develop a capacity-building program that allows a broad engagement of the data quality professional community, patients and citizens (Work packages 4 and 5).
In the QUANTUM project, Sciensano (the EU Health Information System unit) is leading the work package 2 dedicated to the design, development and testing of the label. Within the work package 1, Sciensano will carry out the selection of a relevant and consensual set of criteria for data quality and utility assessment through a Delphi process, and will contribute to the specification of the quality and utility metrics. Within the work package 4 (Capacity building, community engagement and scale up), Sciensano will set up a repository to establish a community of practice and best practice resources. For the work package 5 (Dissemination and outreach), we will carry out the access to a wider audience through social media, newsletters, and layperson reports and visuals.
