European Health Data Space must protect public trust, workers’ rights

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(6 December 2023) Last week the European Parliament’s Committees on Environment, Public Health and Food Safety (ENVI) and Civil Liberties, Justice and Home Affairs (LIBE) approved a compromise position on the creation of a European Health Data Space. While EPSU recognises the significance of the EHDS in advancing healthcare through data-driven solutions, we believe MEPs must address certain concerns and advocate for key improvements ahead of the final vote in plenary next week.

1. Worker engagement and adequate staffing

While the EHDS compromise text recognises the need for increased funding and capacity building, it falls short in addressing the critical issue of understaffing within Europe's health systems. EPSU emphasises that any successful implementation of the EHDS requires a parallel focus on ensuring adequate staffing levels. Failure to address this issue may lead to a lack of buy-in from health and care workers, overburdening of professionals, and potential errors in the EHDS's execution.

2. Patient consent mechanism

EPSU supports the introduction of a consent mechanism for data sharing, but we advocate for a comprehensive opt-in system for secondary data sharing. A robust opt-in approach ensures transparency and places the responsibility on data users to prioritise patient trust. We believe that patients deserve clear information about the use of their sensitive data, and a comprehensive opt-in mechanism aligns with these principles.

3. Recognition of social partners

The EHDS compromise lacks recognition of the crucial role played by trade unions and worker representatives in the implementation process. The advisory forum to the EHDS Board should be an arena for inclusive dialogue, with members appointed by recognised European social partners in the healthcare sector amongst others. Trade unions and the health professionals organised must be acknowledged as relevant stakeholders. The inclusion of commercial interests in EHDS governance, regardless of company size, raises significant concerns and must be rejected.

4. Publicly owned systems for data management

While the compromise text improves data storage and processing within the EU, it does not ensure that the data is managed through publicly owned systems. EPSU underscores the importance of preventing private contractors from exploiting public health data for profit. Recent examples, such as the awarding of contracts to Palantir in the UK, highlight the risks associated with private involvement in public health data systems.

The success of the EHDS requires a collaborative approach that actively engages workers, prioritises patient trust, recognises the role of social partners, and does not contribute to the further commercialisation of health and care. We encourage MEPs to consider these crucial aspects during the upcoming vote to build a robust and effective European Health Data Space.