Country / Region
EMEA
Tags
Data quality, EHDS (European Health Data Space), Global/International, Research
The EU QUANTUM Data Holder’s Maturity Model represents a significant advancement in the assessment and enhancement of health data quality and management maturity across Europe. Developed as part of the QUANTUM initiative, this model provides a structured approach to evaluating data holders’ capabilities in managing health data, ensuring alignment with the European Health Data Space (EHDS) regulations. This presentation will explore the development, methodology, and key findings of the model, highlighting its relevance for standardisation, interoperability and governance within health data ecosystems. Attendees will gain insight into the model’s application and its role in fostering a more integrated and reliable data-sharing environment.
Description
The QUANTUM initiative aims to establish a robust framework for assessing data holders’ maturity in managing health data for secondary use. As part of Work Package 1.4, the Data Holder’s Maturity Model was developed through extensive stakeholder consultations, focus groups, and surveys. The model provides a standardised approach to evaluating key dimensions of data maturity, including governance, quality management, automation and compliance with EHDS regulations. This research addresses the need for harmonisation in data management practices, ensuring that data holders across Europe meet defined criteria for quality and utility. The findings contribute to the broader goal of fostering trust and interoperability within the European Health Data Space.
To develop the model, a multi-stage methodology was employed. Initially, desk research was conducted to review existing maturity models and identify key factors influencing data management. This was followed by a series of focus groups, engaging data managers and quality assurance professionals from various European health data organizations. Participants provided insights into key processes, best practices, and common challenges in data management. These discussions helped refine the dimensions and criteria of the model.
A consensus-building approach was adopted, incorporating survey feedback from stakeholders to validate the proposed maturity levels. The survey aimed to measure agreement on the definitions and relevance of different maturity dimensions, using a nine-point Likert scale to capture nuanced perspectives. The results informed further refinements, ensuring the model accurately reflects the operational realities of diverse data holders.
The final model consists of a structured matrix with ten dimensions, each categorised into five maturity levels ranging from "Initial" (no formal processes in place) to "Optimised" (fully automated and continuously improved processes). The model also includes a scoring system that allows organisations to benchmark their progress and identify areas for improvement. Future developments will focus on piloting the model in real-world settings and integrating automated assessment tools to facilitate its adoption across the European health data ecosystem.
Scope
SNOMED CT plays a pivotal role in the implementation of the Data Holder’s Maturity Model by enabling standardised clinical terminology and semantic interoperability. By incorporating SNOMED CT into data governance frameworks, the maturity model ensures consistency in clinical data representation across different health systems. This enhances data comparability, facilitates automated quality assessments, and supports efficient data exchange. SNOMED CT’s structured vocabulary is instrumental in defining quality benchmarks, enabling data holders to align their datasets with international standards and improve data usability for research and policy-making.
How SNOMED CT will be used
SNOMED CT was selected due to its comprehensive, multilingual clinical terminology that supports structured and meaningful data exchange. Its widespread adoption in health information systems across Europe makes it an ideal choice for ensuring interoperability within the QUANTUM framework. The maturity model requires a standardised approach to assessing data quality, completeness, and consistency—areas where SNOMED CT excels. Furthermore, the ability to map SNOMED CT concepts to other classification systems enhances cross-border data utilisation, making it an essential component in advancing health data standardisation under the EHDS framework.
Why SNOMED CT will be used
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