well as competition law; and making sure that the rules for access and use of data are fair, practical and clear.
Establishing transparent, fair and interoperable connections is likewise one of the key objectives being pursued by eHealth competence centres that gather together in the ELO Network. Accordingly, their activities match a number of the implementation targets mentioned by the European Commission in the European Strategy for data. It has been announced that these will be funded in support of the establishment of EU-wide common, interoperable data spaces in strategic sectors. It is important to look at both the opportunities (facilitators) and the barriers.
In particular, facilitating data spaces will include:
- Deployment of data-sharing tools and platforms
- Creation of data governance frameworks
- Improving the availability, quality and interoperability of data.
Moving towards implementing the European data strategy, some barriers need to be overcome:
- Not enough data available for reuse
- No real user empowerment / imperfect data portability mechanisms
- Skills shortages and low data literacy
- Fragmentation of the single market
- Lack of European data processing and storage solutions
- Absence of comprehensive data governance approaches.
Data spaces and data sovereignty of persons and organisations
A specific example of today’s focus on data spaces lies in the work of the International Data Spaces
Association (IDSA).
Over several years, IDSA has established a number of approaches to sharing data across industry sectors; examples include smart health, the smart home, and smart industry. The health sector is one of these.
In the age of digitisation, health data is the “new blood”. It enables the facilitation of powerful tools and methods for personalised precision (P4) medicine. P4 approaches are largely data-driven and are thus in need of
privacy-preserving methods capable of processing highly sensitive, re-identifiable data and yet maintaining data sovereignty.
Data sovereignty can be defined as a natural person’s or a corporate entity’s capability of being entirely self-determined with regard to its data. This implies in practice (in healthcare) that each user (citizen/patient)
decides for her/himself where her/his data is stored, as well as who may process it