Estonian official: Coalition of the willing can ‘drive’ healthcare data in Europe

Ain Aaviksoo: "We will also encourage one stop-shop for countries to access the data […] it is possible." [Shutterstock]

This article is part of our special report Pharma innovation.

As long as the political will exists, a coalition of EU member states can speed up healthcare data mobility in Europe and start showing cross-border results in order to encourage others to join, an Estonian government official told

Speaking on the sidelines of the European Health Forum in Gastein last week (4-6 October), Ain Aaviksoo, who is responsible for e-services and innovation in Estonia’s Ministry of Social Affairs, talked about the importance of healthcare digitalisation and the efforts that his country has made during its EU presidency to speed up the adoption of digital procedures.

He stressed that technology by itself is powerless but said it has a huge potential if applied correctly.

“We can gain efficiency, we can get a more targeted, more precise approach, we can personalise, we can get quicker diagnoses. So if we apply it at the right place to the right people, it can also provide savings.”

Data mobility: the 5th freedom

Speaking about his country’s EU presidency focus, Aaviksoo said making advances in digital in all policy areas was important. “The mobility of data is the potential 5th freedom in Europe,” he said.

The cross-border flow of data has taken centre stage in the discussion in Brussels. When citizens move to another EU member state, their healthcare data is in fact simply “lost”.

“People move and their data doesn’t follow them. And they are therefore missing out on good solutions,” Aaviksoo said, stressing that the main reason is the market fragmentation caused by data protection barriers.

The official cited an eHealth solution that offers crowd-based services for stroke rehabilitation services, but which is only available in Estonia. “There are limited applications in Germany, but for that, this company needs to open different offices in other regions in addition to Estonia,” he said.

He added that it’s more a question of implementation hurdles than actual legal barriers, as different member states have different limitations. But in reality, even where the law would allow for the offering of services, other countries are still hesitant.

“Therefore we want to proceed with our presidency to encourage those member states that are willing and able to share the data to do it, and to show the way to those others who may need to change,” the Estonian official emphasised.

“So the political will is there. Now the implementation can start with those who are capable of going ahead first and show results in a cross-border manner on a European scale pretty soon.”

Estonia has not proposed any new legal initiatives, but according to Aaviksoo, Tallin is proposing a coalition of the willing consisting of member states that are backing it with their own national investment. “But also we have very good collaboration with the Commission, who is seconding that, and also the private sector is coming.”

“By the end of this year, we hope to collect as many signatures as possible to what we call a letter of intent.”

E-health and the ‘fine line’ of big data

The introduction of digital technology in healthcare systems might be viewed by health stakeholders in a positive light. However, policymakers are yet to address issues related to data collection and use that are considered crucial in the management of chronic conditions like diabetes.

How do we solve data protection?

According to the government official, member states can apply internal additional measures when it comes to health data. The coalition of the willing enables, at a minimum, implementation of the EU’s data protection regulation.

“We have very strong reasons to believe there is actually an increased consensus among many member states that the combination of what we call technology, legal framework and data governance is what needs to be adjusted in specific countries. So it is not specific laws, but really how you apply that,” he said.

He also pointed out that secondary use of medical data for research purposes has to be there.

“We will also encourage a one-stop-shop for countries to access the data, […] it is possible.”

The “black box”

Clemens Martin Auer, EHFG president and director-general at the Austrian Federal Ministry of Health and Women’s Affairs agreed that the biggest challenge was that there is a broad consensus at the policy level that ITC and health, or eHealth, is one of the most important innovative drivers in the healthcare sector.

“And especially for organising the continuous care in the fragmented world of healthcare services,” he said.

He noted that a coalition of the willing to a certain extent is true but the largest countries, such as Germany, are a “black box”.

“Continuity of care is about transferable data. So we have to organise interoperability. But in a fragmented world to organise interoperability is a challenge. So there we are. Can we agree on a European coding system? No, we can’t, because certain member states have certain approaches to this ontology, this coding system. We are getting there, but these processes are slow and need a lot of conviction and convincing people.”

Pharma innovation

Hit hard by austerity, the health systems of EU member states are under huge pressure. Combined with an aging population and the alarming burden of chronic illnesses, EU member states have targeted specific aspects of the incentives granted to the pharma industry in order to decrease drug prices.

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