EPSU concerned about Big Tech companies dominating EHDS

health data security © Can Stock Photo gina_sanders

(21 February 2024) The trilogue negotiations between Council and Parliament on the European Health Data Space (EHDS) Regulation are in their final stages. The tech industries are lobbying to ensure they become major beneficiaries of the new rules on medical data, including by protecting Intellectual Property rights. EU citizens and patients would be the losers. And the job for health professionals will become more difficult to promote public health.

EPSU has been working with several organisations to raise those concerns. The EPSU General Secretary joined researchers of SOMO recently highlighting them again.

In short, the proposal for the creation of the EHDS will make it mandatory for healthcare providers to collect, store and process the medical data of all their patients in a standardised way. The proposal will also make it mandatory for these providers to share their data (in an anonymised or ‘pseudonymised’ format) with national Health Data Access Bodies, who will then be able to share that data with any party, including companies, interested in conducting research or developing medical products or medicines.

In our view, the EU is rolling out the red carpet for Big Tech companies to make large profits and expand its monopoly power using EU citizens’ health data and healthcare professionals’ data infrastructures. While better use and exchange of digital health data can lead to significant health benefits, it is crucial that policy-makers include a number of safeguards in the EHDS that ensure patients, citizens and healthcare are the real beneficiaries of the new rules, rather than Big Tech companies such as Amazon, Google, and Microsoft.

We call upon the EU negotiators to include requirements for companies to charge fair prices for, and ensure the accessibility of, the products and services that were developed using EU citizens’ health data. We need clear requirements ensuring that citizens and patients have a strong voice in the decisions on who gets access to which medical data. Earlier we joint an open letter on making it possible for EU citizens to opt-out of the EHDS, which was published by EDRi and a number of civil society organisations last week.

For the article

For a previous joint position

For earlier work on digitalisation