Why are European health data deals so difficult to achieve? – Politico

This was supposed to be the last political negotiation to cross the line and reach an agreement on Europe’s health data sharing law before the EU elections.

Instead, negotiators showed up empty-handed at 5 a.m. Friday morning. By lunch break, There was a flurry of criticism from weary attendees demanding an explanation as to why no deal could be reached.

Members of the European Parliament and Council criticized each other for sticking to their positions and attending the meeting without making a move. Some people directly criticized a member of the political group Renew for not even attending.

The European Health Data Space (EHDS) is designed to provide an EU-wide system for national health data to improve care across borders. The European Commission’s Health Department, which drafted the EHDS, also claims that it will benefit research by providing academics and industry with large amounts of health data needed for research.

But the commission’s efforts to provide a trove of valuable health data from its 450 million citizens, and the rewards for public health research it can provide, will be limited by the amount of sensitive personal health data collected. Some argue that it does not take proper account of the means by which it is carried out. Protected. Patients may wish to keep sensitive data about, for example, abortions, HIV status, miscarriage, cancer survival, etc. private, let alone shared with clinicians across Europe. anonymously Together with researchers and industry.

This lack of data privacy foresight is the biggest mountain to climb. The institution has been divided since negotiations began. His EHDS document, led by the European Commission’s health department DG SANTE, did not offer an option for patients to opt out of the system. In contrast, the European Parliament believes that everyone should be able to exit the system. However, the Council said it should be up to each country to decide under what circumstances it should allow opt-outs.

However, despite burning the midnight oil, still no compromise was found between the three parties.

point finger

Regardless of the dawn finish, the blame game started surprisingly quickly.

“The European Parliament was completely unprepared to negotiate,” one Council source, speaking candidly on condition of anonymity, like others quoted in this article, told POLITICO. A Belgian presidential official said the 10-hour extension was “practical proof” of a willingness to negotiate.

Another Council official said that while “the Council came up with a number of compromises and showed flexibility,” the European Parliament (EP) “spent almost all of its time in subcommittees and ultimately “One compromise proposal was proposed, but it was withdrawn almost immediately for the following reasons.” This is their internal discussion. ”

No compromise plan has been disclosed.

“The council spent more than 10 hours waiting and considering, growing alarmed by the difficulties within the EP,” the official said.

But MP Patrick Breyer, who is representing the Greens in the talks, said MPs had encountered “fierce resistance” to the Greens’ position. To enable patients to opt out from EU governments and the European Commission.

For Congress, it’s a matter of protecting individual privacy.And with the EU elections just three months away, lawmakers will also be keeping an eye on online memes proposing data-sharing laws As a provision of sensitive data to pharmaceutical companies.

For the Council, many countries already have versions of health data systems. In some cases, patients have complete control over who can see and use their data; in others, they do not.

But the council also recognizes that vast amounts of new data will be of great help to researchers hoping to understand the disease and find treatments.

Ahead of Thursday’s talks, some in the Security Council suggested countries would be the ones to come to terms. One diplomat told Politico earlier this week that it would be “very difficult” to reach an agreement unless the Security Council moved in line with Congress’ position.

However, parliamentary sources said some political groups wanted a thaw and instead accused parliament of being inflexible.

Meanwhile, a lawmaker from the centrist group Renew went missing and was replaced by a political adviser, leaving those hoping to reach a compromise with the council in a “difficult situation”, the Belgian president’s office said. the official said.

Only with them in the room would it have been possible for the center-right European People’s Party and the center-left Socialists and Democrats to win a combined majority. According to parliamentary sources, that was not possible because the Left, the Green Party and Identity and Democracy were entrenched in the parliamentary mandate.

However, Renew officials denied this. The failure to reach an agreement was due to insufficient text, not because MPs were not present.

Negotiators currently plan to hold final talks next week. If no compromise is reached, the file will be sent to the next mandate, as there is no time for parliament to vote on a deal before the election.