TEHDAS scrutinises data access processes in four countries
The diversity of health data management in EU member states hinders data use. TEHDAS has studied a range of data holders to understand the health data access processes in Europe.
The recent report of the joint action Towards the European Health Data Space (TEHDAS) highlights the importance of identifying a single contact point per member state to be responsible for health data access and a centralisation of data permit requests. The report also expresses the need to promote the implementation of national nodes, which are national organisations providing services for data access.
The report highlights the different approaches to health data governance and access due to the legal and political frameworks of selected countries. In Finland and France, national nodes have been established that aim to integrate requests for data access and granting permits within a centralised system. In the Netherlands and Spain, there are several entities that deal with data access and grant permits under a decentralised system.
Despite the different systems in the countries studied, the process of reviewing and granting access is quite similar. The report describes the steps researchers have to take to obtain access to health data.
Based on the results, the report outlines a draft generic health data application procedure that includes the following steps: initiating contact and data discovery, data permit request and review, data application review, data permit issuance and data use agreement (if applicable: payment of data access fee) and data provision and data use (including the preparation of the access).
TEHDAS’ report is based on an exhaustive questionnaire to the selected institutions and additional desk research. The findings will be further developed and TEHDAS will provide final recommendations on data governance in 2023.
The list of authors in the report was updated on 6 April.