TEHDAS suggests options to overcome data barriers
Researchers and policymakers in Europe experience several barriers to cross-border health data sharing, leading to data not being fully used to everyone’s benefit. TEHDAS has identified options to tackle these obstacles.
The recent report of the joint action Towards the European Health Data Space (TEHDAS) examines the perspectives of researchers and policymakers (data users) on the secondary use of health data. The report provides policy options to the European Commission to address identified barriers for cross-border data sharing. The Commission and the member states will need to address these barriers to ensure the successful functioning of the forthcoming European Health Data Space.
The researchers and policymakers report a wide range of barriers to the cross-border sharing of health data. These are mostly caused by differing legal interpretations and data management practices in Europe. Contrary to popular belief technical issues were among the least mentioned barriers to data sharing.
Currently, countries have national laws or rules on health and research data in addition to the General Data Protection Regulation (GDPR). To further complicate the secondary use of health data, countries interpret the GDPR in differing ways. For example, there is no common European understanding of key elements of the regulation, such as data anonymisation and pseudonymisation. Both are modifications to data to guarantee the privacy of individuals whose data is being used according to legal frameworks.
To address the identified barriers, TEHDAS has developed a set of policy options for the European Commission. One of them is that the Commission could propose legislation to clearly define the secondary use of health data and outline rules for the collection, use and sharing of data for secondary use. The Commission could also propose legislation that defines anonymisation and pseudonymisation for the European Health Data Space, and harmonises national derogations made to the GDPR.
The current barriers result in health data being significantly underused for secondary purposes such as research and policymaking. As a result, this underuse reduces benefits for all, such as innovation and the development of more effective medicines and treatments.
The report is based on a literature review, data sharing framework, stakeholder case studies and expert interviews. The TEHDAS team has previously identified the most common barriers for sharing health data.
The document has been updated on 30 August 2022.