EATG contributes to the European Health Data Space public consultation

EATG submitted its views concerning the establishment of the European Health Data Space (EHDS), a priority of the European Commission to optimise digital health to provide high-quality healthcare and reduce inequalities. It sees strengthened cooperation at EU level as a way to

promote access to health data for research and innovation on new preventive strategies, as well as on diagnosis and treatment of diseases to improve health outcomes, while ensuring that citizens have control over their own personal data.

The European Commission launched a public consultation regarding a future legislative framework to address the issues related to the exchange of and access to health data and the use of digital services and products including artificial intelligence in health. These include: health data exchange and the provision of healthcare services (primary use of health data); effective access and control over one’s own health data; fragmentation of digital standards and limited digital interoperability between healthcare systems; secondary use of health data; The use of digital health services and products for the provision of healthcare; safety and fundamental rights protection in the use of AI in healthcare, as well as training, testing and validation of AI systems in health.

EATG addressed the three areas investigated by the EC, namely:

1. Access and use of personal health data for healthcare, research and innovation, policy-making and regulatory decision-making.  EATG underlines the need for very strong privacy and data protection safeguards (including to revoke, withdraw consent), including considering the structural discrimination and stigma affecting people living with or affected by HIV. We also stress the need to address health literacy, digital literacy, the digital gap, easy pathway to one’s own digital health to engage with it.
2.  Digital health services and products. In answers, EATG builds on the EmERGE experience and evidence for the development and deployment of persons-centred digital health products and services: benefits for patients/ service users; ways to address deployment/ uptake challenges;  guidelines at EU level and certification.
3. Rules for the development and deployment of Artificial Intelligence (AI) in healthcare. EATG addresses ethical issues and making the use of AI in health care is safe, ethical and equitable. EATG underlines the role that the EU must play in establishing public ownership, transparency, accountability of AI players to ensure appropriate and trustable development, deployment and use of Artificial Intelligence in healthcare that would be aiding the best interest of the patients and health service users.

You can find our responses to the questionnaire at the document attached.