TEHDAS - WP6 - D6.3 - Recommendations on a Data Quality Framework for the European Health Data Space for secondary use
Creators: name: Bernal-Delgado, Enrique
name: Estupiñán-Romero, Francisco
name: Martínez-Lizaga, Natalia
name: Doupi, Persephone
name: Mäkinen, Mari
name: Mulkholm, Malou
name: Nyvold Lundbye, Annelise
name: González-García, Juan
name: Tellería-Orriols, Carlos
Publisher: name: Zenodo
Year: 2023
Subjects: Data Quality Framework
TEHDAS
Joint Action
Health Data
Health Data Space
Data Space
HP-JA-2020-1

description: 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 data use phase: 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 published results.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.
description: Executive summary
This report describes the TEHDAS JA Data Quality Framework (DQF) as an approach to data quality and utility for the secondary use of health data in HealthData@EU.
In TEHDAS DQF, Data quality refers to how data fits data users' needs. This fit-for-purpose definition implies an approach to data quality that includes both elements of technical quality and utility. From TEHDAS's perspective, quality and utility dimensions are relevance, accuracy and reliability, coherence, coverage, completeness and timeliness. This fitting-for-purpose approach in TEHDAS DQF implies focusing both on datasets and data holders. In this approach, data holders 'TEHDAS's maturity in data quality management becomes paramount.
TEHDAS DQF identifies several activities and services along the Data life cycle that HealthData@EU actors should provide with a view to ensure data quality and utility. Some of those activities are placed at the data preparation phase when data holders process the data for reuse; among those activities, the use of data management and data quality assurance procedures, the semantic mapping of the datasets using international standards, the linkage of datasets and the application of privacy enhancement technologies, the publication of meta-data referring to their datasets and, eventually the enrichment of their datasets and procedures after the reuse of the datasets is terminated. Some other activities affecting data quality and utility are put in place when the data user interacts with the HealthData@EU; those activities include the cataloguing of meta-data, activities procuring data minimisation and purpose limitation, data processing in secure processing environments (SPE), activities aimed at returning the research outputs pursuing data and procedures for the enrichment of data at the data holder level and activities enabling data users' feedback on fitness-for-purpose.
TEHDAS DQF proposes using both the legal enforcement (and subsequent implementing and delegated acts) and the use of guidance and recommendation as governance mechanisms at the disposal of the HealthData@EU actors. Among those to be legally bound are the publication and cataloguing of datasets, the labelling of the datasets according to quality and utility, the implementation of privacy enhancement technologies and procedures, and the supervision of measures pursuing data quality and utility. Among those to be implemented under a mechanism of guidance and recommendation: implementation and supervision of the data quality assurance maturity models, implementation of semantic standards, the implementation of mechanisms for privacy enhancement, the implementation of mechanisms for datasets enrichment, or the implementation of mechanisms for the return of other digital objects to enrich the data quality procedures.
Finally, TEHDAS DQF provides 13 recommendations affecting the implementation of data quality and utility in the HealthData@EU. The recommendations were voted on and reached a high level of agreement.
description: Disclaimer
The content of this deliverable represents the views of the author(s) only and is his/her/their sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for the use of its contents.