Updated: TEHDAS identifies barriers to data sharing
European researchers and policymakers experience barriers in cross-border data sharing at the cost of health policies and innovations. The main obstacle is differing interpretations of the law.
Download the summary of results
The TEHDAS team conducted a literature review to analyse the existing evidence of barriers to data sharing in Europe. Of those identified, the majority were related to differing legal interpretations across Europe with the remainder focused on infrastructure, data management, trust and transparency.
Whether researchers or policymakers, individuals reported experiencing barriers to cross-border data sharing impacting their ability to innovate in health and thereby save lives. The success of the European Health Data Space depends on the safe, secure and free flow of health data.
Rosie Richards, Scientific Policy Manager and Head of Digital and Research Policy at the NHS Confederation
Barriers with high-impact reoccurring issues were prioritised and selected for further exploration via detailed case studies. Twenty-three countries participated in the study, submitting 100 case studies on the following eleven priority barriers. Each barrier has been categorised under different issues.
| Barrier description | Issue | |
|---|---|---|
| 1 | Differences in governance and health data systems in Europe. | Infrastructure |
| 2 | European countries can set different derogations under the General Data Protection Regulation. | Legal |
| 3 | A lack of a common European interpretation of what constitutes ‘sufficient anonymisation’ to transform personal data to non-personal data. | Legal |
| 4 | Some European countries have national legislation/rules around health and research data in addition to GDPR. | Legal |
| 5 | European countries have different preferences as to the choice of legal basis for processing under the GDPR. | Legal |
| 6 | A lack of a common European interpretation of what constitutes ‘pseudonymisation’. | Legal |
| 7 | A lack of interoperability between data, hindering the ability to analyse multiple data sets within and between European countries. | Data |
| 8 | A lack of a common European interpretation of what is and is not ‘secondary use’ of data. | Legal |
| 9 | Identification of and access to suitable data sets is challenging. | Data |
| 10 | The use of different taxonomy and ontology codes across Europe to label the same health condition making comparisons between data sets challenging. | Data |
| 11 | A lack of standardised data sharing agreements for products developed by private sector providers using public health data to facilitate safe data sharing and protect public investment. | Trust |
Findings as evidence base for future work
Since February 2021, TEHDAS has been exploring the barriers to cross-border data sharing to provide the European Commission with concrete recommendations to resolve and/or mitigate these barriers within the European Health Data Space (EHDS).
Our findings show that the identified barriers are shared by both researchers and policymakers. However, they may not experience them in the same way. Going forward our work will further explore the viability of the proposed recommendations and mitigations to the priority barriers identified.
Linda Abboud, Project Researcher at Sciensano, the TEHDAS partner leading this study
This literature review is part of the TEHDAS work package Sharing data for health. A final report will be published in early 2022.
If you are interested in this work and would like to share your views, please contact: TEHDAS.sciensano@sciensano.be.
The countries that contributed to the case studies
- Austria
- Belgium
- Croatia
- Czech Republic
- Denmark
- Estonia
- Finland
- France
- Germany
- Greece
- Ireland
- Latvia
- Luxembourg
- Moldova
- Netherlands
- Norway
- Poland
- Romania
- Serbia
- Slovenia
- Spain
- Sweden
- United Kingdom
The news item has been updated on 28 September 2021 with a summary report and an annex.
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