On 26 July 2021, EASL submitted its views to a public consultation held by the European Commission (EC) on the establishing of the future European Health Data Space (EHDS). Because it is a priority for the EC to optimise digital health to provide high-quality healthcare and reduce inequalities, members of the public, stakeholders, and organisations were invited to submit their suggestions, informed by their areas of expertise and experience. These contributions will help inform the design of a legal framework for an EHDS and to ensure transparency and accountability throughout.
What is the goal of the European Health Data Space consultation?
The European Commission’s proposal for EHDS pursues three objectives:
- facilitating (cross-border) sharing of health data either for improving health care (primary purpose) or for research and policy purposes (secondary purposes);
- removing obstacles to the free movement of digital health services; and
- supporting the development and deployment of artificial intelligence services.
The European Institutions and Member States are intended support research projects and cross-country collaboration by setting up EU-wide platforms with the aim of sharing data and closing the gap between medical knowledge and clinical practice.
How has EASL contributed to this consultation?
For us at EASL, the sourcing and maintaining good quality data concerning the diagnosis and treatment pathways of patients with liver diseases, including liver cancer, remain crucial – urgent and topical. This is the community that EASL most closely represents: liver professionals and liver patients. In our response to the EHDS public consultation, EASL underlined the importance of access to health data for medical research and the central role of medical associations, such as in training.
We play a vital role in training – and thus influencing the education of – future physicians and in enabling them to proactively embrace the imminent changes in the practice of medicine,
commented Prof. Jeff Lazarus, EASL Policy and Public Health Committee Member, and Vice-Chair of the EASL International Liver Foundation.
Finally, EASL formulated recommendations for the EHDS and other EU actions relating to the protection of patients: protecting their diverse rights, safeguarding their sensitive data, and thereby enabling citizens to develop greater trust in digital health and to give patients access to their own data.
Digital health tools and apps, artificial intelligence, and big data can help people ascertain how their chances of having or developing a specific medical condition can be influenced by engaging in certain activities or abstaining from them. However, at every step of promoting digital access, we must aim to protect people’s rights – including fundamental, economic, environmental, and social rights,
said Prof. Maria Buti, Professor of Medicine at the Internal Medicine and Hepatology Department, Hospital General Universitari Valle Hebron, Barcelona, and EASL’s EU Policy Councillor, and Chair of EASL’s Policy and Public Health Committee.