On 25 November, the European Commission unveiled new rules for data governance, aiming to boost data sharing and support the creation of European data spaces, as outlined in the Data Strategy published by the Commission in February this year. Of note, one of the data spaces proposed is a European Health Data Space, which aims to facilitate the delivery of healthcare across borders by enabling the safe exchange of electronic health records.
In the new Data Governance Act, the European Commission lays out a number of measures to increase trust in data sharing, to ensure that citizens are able to better understand and control the ways in which data about them is used and shared. The Regulation also proposes a new model of decentralized data sharing, whereby organisations can act as neutral data intermediaries for pooling or sharing of data. Another concept covered in the Regulation is ‘data altruism’, where individuals or companies can give broad consent for their data to be shared – but only if it used for the common good. Finally, the Data Governance Act creates mechanisms to facilitate the sharing and re-use of certain categories of data that are held by the public sector (including data from scientific research, for example), identifying a defined set of circumstances under which this can be permitted, conditional on the respect of the rights of others.
