TEHDAS’ proposals for data quality and utility in EHDS
Data quality is essential for reliable and fit-for-purpose data. TEHDAS has developed a framework to identify the main elements of data quality and utility in the European health data space (EHDS).
A new report by the joint action Towards the European Health Data Space (TEHDAS) defines a framework that specifies the main elements of data quality and makes recommendations to the European Commission and the member states on data quality and utility in the EHDS.
The main features of data quality are relevance, accuracy and reliability, coherence, coverage, completeness and timeliness. Data quality refers to how well data fits the user’s needs. In the framework of TEHDAS, these needs relate to the secondary use of health data such as research, innovation and policymaking.
The TEHDAS data quality framework also defines what activities are relevant for each phase of the data use: discovering the data, applying for permits to use the data, using the data effectively and publishing results.
The report proposes 13 recommendations for ensuring the quality and utility of data in the EHDS:
Recommendation 1. Technical quality and utility are vital for data quality.
Recommendation 2. Apply the main elements of data quality defined by TEHDAS for secondary purposes.
Recommendation 3. Implement actions to improve data holders’ maturity for data management.
Recommendation 4. Data quality framework should be applied in each phase of the use of data (the data life cycle).
Recommendation 5. Data holders’ maturity for data management needs to be assessed according to an EU-wide model and results published.
Recommendation 6. Data holders need to implement widely adopted standards of semantic interoperability.
Recommendation 7. Data holders need to publish a description of their datasets using EU-adopted publication standards.
Recommendation 8. Data holders should publish information on the quality and utility of their datasets.
Recommendation 9. Health data access bodies should publish and maintain a metadata catalogue of all datasets made public by the data holders under their purview.
Recommendation 10. Data holders should implement data management procedures to allow for dataset linkage and persistent identification methods across datasets and over time while protecting personal data.
Recommendation 11. Data privacy and security safeguards required by the EHDS and privacy enhancement technologies used should maintain the utility of the data for research.
Recommendation 12. Data users should be incentivised to provide feedback on the quality and utility of the datasets delivered to them.
Recommendation 13. Data users, data holders and health data access bodies need to implement a functional way to enrich datasets.
The report concludes that measures to improve data quality in the EHDS must be primarily a legal requirement, but can be complemented with other measures.
This report concludes the work of TEHDAS on data quality.
The project steering group has approved the report. The European Commission gives final approval to all joint action’s deliverables.