EU legislation on health data a gift to Big Tech

The European Health Data Space under negotiations will turn citizens’ medical data into profits for US technology corporations.

This month and next, European Union member states and the European Parliament are holding ‘trilogue’ negotiations on the proposal for the creation of a European Health Data Space (EHDS), with the aim of reaching a political agreement before the European elections in June. At the heart of the proposal is standardised language and infrastructure for healthcare providers across the EU to collect and process patient health data in digital records, including medical information, test results and prescriptions.

These data will be used for the primary care of patients as well as for secondary purposes, such as scientific research, policy-making and the development of products and services by companies. The proposal also aims to create a single market for digital-health products and services, such as electronic record systems and applications for ‘telehealth’.

Better access for EU citizens to their own medical data and the more efficient digital exchange of data between healthcare providers can bring significant benefits to healthcare systems and prevent duplication of professional work. The secondary use of digital-health data offers significant opportunities to develop better healthcare policies and new drugs or treatments.

Rolling out the red carpet

With this proposal however, the EU is rolling out the red carpet for technology corporations such as Amazon, Google and Microsoft, which are becoming increasingly active in digital healthcare. The EHDS offers Big Tech an unprecedented opportunity to expand its influence over healthcare providers, governments and patients, and to increase its already worryingly large market power. The proposal stands in stark contrast to the efforts to contain that excessive power—and related threats to European economies and democracies—through new EU legislation such as the Digital Services Act and the Digital Markets Act.

For Big Tech, healthcare is a huge source of extremely valuable data, convertible into potential revenue. And the technology companies have been actively pursuing related acquisitions, partnerships and patent applications in recent years. Take Google’s acquisition of the consumer-electronics and fitness company Fitbit in 2019 ($2.1 billion) and Microsoft’s takeover of the artificial-intelligence-speech company Nuance Communications in 2021 ($19.7 billion).

The number of healthcare-related patents registered by Big Tech to corral intellectual property has meanwhile grown rapidly. The companies have also entered into dozens of partnerships with teaching hospitals and healthcare providers, especially in the United States. Controversial cases have included Project Nightingale, through which the healthcare data of tens of millions of US citizens ended up at Google without their knowledge or consent, via a partnership with the healthcare provider Ascension.

Perfect platform

The EHDS proposal is set to facilitate Big Tech increasing its power over the European economy and healthcare systems, in at least two ways. First, while any company will be allowed to request access to healthcare data for research purposes, with its domination of AI and cloud storage space Big Tech is in by far the best position to benefit. It can then patent products and services developed using European citizens’ health data, subsequently charging these same citizens high prices for them.

This is a pattern known all too well in pharmaceuticals, in which expensive drugs are often developed through publicly funded research. While Big Tech conducts almost all of its research in healthcare in collaboration with academic institutes, more than 99 per cent of the resulting patent applications are filed exclusively by the companies.

Secondly, the EHDS creates the perfect platform for Big Tech to become the unavoidable supplier of digital infrastructure for storing and exchanging patient data to the thousands of European healthcare providers which will need to comply with the system. There is almost no escape in cloud storage, for example, in which Amazon, Microsoft and Google hold a combined market share of 65 per cent. In the Netherlands, an estimated three-quarters of all general-practitioner patient records are stored on Amazon servers, while the French Health Data Hub relies on Microsoft for the digital infrastructure needed for the exchange of data.

In the absence of competition, these companies will be able to raise at will the prices they charge providers for their products and services. Moreover, Big Tech’s market power will enable it to gain significant influence over the design of essential digital-health infrastructure, health systems and public-health policies, at the expense of the voices of patients, healthcare professionals and policy-makers.

Next frontier of growth

The negotiators from the European Parliament and the Council of the EU can still prevent healthcare from becoming Big Tech’s next frontier of growth—at least in part. The EHDS should set clear rules for reciprocity: the benefits of an innovation developed with the help of European health data, including medicines and other health products, should flow back to society, including through fair price levels. And Europe’s citizens should have a voice in the decision-making—to whom their health data are made available and on what terms.

Governments meanwhile need to invest in public digital-health infrastructure, instead of relying on private companies. And EU market regulators need to act consistently against Big Tech’s monopolistic market positions, in the interest of economies and societies that work for people, not profits.