European Health Data Space must recognise existing problems in health and care

European Health Data Space EP

(20 January 2023) The European Health Data Space must recognise the existing problems in the health sector before placing disproportionate burdens on workers, says EPSU General Secretary Jan Willem Goudriaan.

An exchange on the challenges and benefits of the European Health Data Space was held on Wednesday, 11 January in the European Parliament. The discussion was hosted by the European Health Union Network and MEP Istvan Ujhelyi (S&D, Hungary). The proposed regulation is currently in its early stages in the European Parliament where the Committee on Environment and Public Health (ENVI) and the Committee on Civil Liberties, Justice and Home Affairs (LIBE) are co-leads.

ENVI rapporteur Tomislav Sokol (EPP, Croatia) described the file as the most important priority for health in 2023. He admitted that use of secondary data under the EHDS will likely be a controversial element, and that the proposal needs stronger consent mechanisms. Several MEPs were present including Victor Negrescu (S&D, Romania), Alex Agius Saliba (EPP, Malta), Sirpa Pietikäinen (EPP, Finland) and Peter Vitanov (S&D, Bulgaria).

The Standing Committee of European Doctors (CPME), International Association of Mutual Benefit Societies (AIM), European Patients Forum (EPF) and European Hospital and Healthcare Federation (HOPE) expressed similar concerns regarding secondary use of data and related consent issues. The proposal also requires greater input from both patients and workers.

Jan Willem Goudriaan, General Secretary, EPSU echoed the views of HOPE and CPME that the serious problems currently impacting health and care workers across Europe must be taken into account when developing the European Health Data Space. With the sector already struggling with unsafe staffing levels, underfunding, low pay levels and post-COVID backlogs, any strategy must come with a realistic timeline that provides adequate training for workers throughout the sector, including administrative workers. Goudriaan also emphasised that data ownership and use of artificial intelligence must not be used to further the commercialisation of health and care. The article proposing the creation of health data markets must be deleted. The risks of creating greater inequalities between regions and countries must also be addressed.

As the voice of health and care workers in Europe, EPSU strongly believes that a human rights centric approach is essential. Health is not a commodity and commercial interests should therefore have no place in the sharing of health data. The European Health Data Space should not be a Trojan horse for increasing competition and liberalising health services. Europe’s citizens were very clear in the Conference on the Future of Europe: they want to see a strengthening of our public health systems, a reduction in health inequalities and no commercialisation of health.