The wheels have been set in motion: the EU is gearing up to reap the benefits of the data economy in healthcare. The primary platform to make that happen is the European Health Data Space (EHDS), which is designed to deliver an EU-wide system for citizens’ health data.
Zsolt Bubori, ecosystem lead for Hungary of the European Institute of Innovation and Technology Health Innostars (an EU body), explains to the Budapest Business Journal that a new infrastructure will be established to gather all the relevant patient information anonymously. That could pave the way for extensive research and a nearly unlimited number of use cases.
“Hungary is in a unique position because, unlike many other member states, we already have a functioning platform that puts us ahead of competition,” he says.
Although that e-space is not perfect since neither its structure nor its search functions are fully optimized, it is a promising starting point.
“We have around two-to-three years to make the most of this edge. So, we don’t have much time to equip stakeholders to be fully ready by the time the market opens.”
Healthcare is a one-of-a-kind position; its data can’t be compared to that gathered on weather, say, or traffic conditions. Conflicts of interest exist, as do rival lobbies, and it is a politically sensitive issue. The prevention of data misuse makes matters even more complicated, not to mention the role of artificial intelligence, which could pose an extra layer of risk. Using AI wisely is of crucial importance, though.
“Data has the potential to transform healthcare in Europe by feeding into groundbreaking research and training advanced AI models, which can improve diagnostics or accelerate drug development,” Bubori explains.
Zsolt Bubori, ecosystem lead for Hungary of the European Institute of Innovation and Technology Health Innostars
Rapid Pace
“The rapid pace at which digital-native pharmaceutical compounds reach clinical trial phases and the prevalence of AI in radiology, reducing diagnosis times, highlight the gains possible with effective data use.”
In a new EIT Health Think Tank report, experts looked at potential hurdles and solutions regarding the implementation of the EHDS across Europe. According to its findings, understanding among critical stakeholders and public acceptance are generally low, particularly on the relationship between primary and secondary data use.
The paper recommends concerted public awareness-raising efforts on the contents and rationale of the regulation, particularly surrounding the use of data to drive critical innovation in the sector.
To close the loop on primary and secondary data use, it recommends that health data access bodies should “facilitate data traceability to foster trust in the new outputs and technologies to be fed back into healthcare.”
In Hungary, the digital transformation of healthcare also faces challenges. The report found that healthcare data is theoretically purchasable but practically inaccessible, so efforts are now directed towards engaging hospitals and other willing data holders in consortia to demonstrate the benefits of data sharing and thus foster a bottom-up approach to gaining wider acceptance.
“It is essential to provide effective European-level responses to the issues of primary and secondary use of health data while ensuring the sovereignty of member states in data management,” says Antal Kuthy, CEO and founder of E-Group.
“As technology advances, it becomes increasingly important to generate knowledge from distributed data without centralization. This so-called ‘federated’ approach ensures data protection and local control, which is crucial for fostering the trust necessary for innovation and for positioning Europe strongly in the healthcare applications of artificial intelligence. We must also ensure that the value and knowledge thus created are sustainably returned to those who contributed their data,” Kuthy says.
Proper Funding Needed
The EIT Health experts also concluded that the EHDS has the potential to revolutionize European healthcare, but without adequate funding, it will likely remain unrealized. As Europe strives to strengthen its position as a global leader in healthcare innovation, sufficient resources must be allocated to initiatives such as EHDS to drive progress and improve the health and well-being of European citizens.
It is argued that current funding is currently misaligned with the ambition outlined by the European Commission and the financial commitment from some member countries falling short of the necessary level to support healthcare and infrastructure developments.
Bubori, in turn, emphasizes the significance of the healthcare data assets for which a national data strategy is being crafted as we speak.
“Ideally, we should have our own enterprises that can offer secure data-driven services by the time the EHDS is fully up and running. It could be a game changer for the economy,” he argues.
Given that competitiveness is one of the buzzwords of Hungary’s EU Presidency, which started on July 1 and will last for six months, this could also provide a boost to the cause. According to Bubori, this could be an excellent opportunity to push the issue to the forefront.
“It would be a great achievement to underscore with well-founded arguments and detailed scenarios how the EU’s competitiveness would improve by utilizing healthcare data.”
This article was first published in the Budapest Business Journal print issue of July 12, 2024.
