Landscape analysis towards data quality and utility labelling in the European Health Data Space.

Area of Science:

• Health Informatics
• Data Governance
• European Health Data Space (EHDS)

Background:

• The European Health Data Space (EHDS) aims to facilitate health data sharing and secondary use across Europe.
• Ensuring data quality (DQ) is crucial for the effective implementation of the EHDS.
• The QUANTUM project focuses on developing methods for labelling data quality, utility, and maturity.

Purpose of the Study:

• To investigate current data quality assessment practices and tools used by European Data Holder institutions.
• To inform the design of an interoperable data quality labelling tool for the EHDS.
• To identify existing open-source health data quality tools suitable for EHDS labelling.

Main Methods:

• A survey was conducted among EU-wide Data Holders, including QUANTUM partners and external institutions.
• A systematic literature review following PRISMA guidelines was performed to identify relevant open-source data quality tools.
• The literature search utilized PubMed, AI-based queries, and known data quality resources.

Main Results:

• Survey responses were received from 27 institutions across 13 European countries, revealing significant heterogeneity in DQ practices and tools.
• Institutions employ a variety of methods, including in-house tools, open-source software, commercial products, and manual processes.
• The systematic review identified 66 data quality tools, with a notable proportion tailored to specific data types like EHRs, omics, and imaging.

Conclusions:

• The diversity in current data quality practices highlights the need for a standardized, interoperable self-assessment labelling tool for the EHDS.
• Such a tool should guide the measurement and consolidation of metrics aligned with EHDS regulations.
• The QUANTUM project is developing this tool to support the labelling of datasets for publication via EU Health Data Access Bodies.