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A potential EU framework could bring big benefits for healthcare and research, but EIT Health said Ireland needs to strike a balance between data protection and data sharing.
A new report suggests an EU-wide initiative to boost healthcare systems has “major obstacles” ahead and that various measures need to be implemented for Ireland to be ready.
The report – from EIT Health Ireland and UK – looked at an EU legislative proposal that aims to give citizens greater control of their own personal health data. This proposal – the European Health Data Space (EHDS) – also aims to make large sets of anonymised health data available across the EU.
This framework is under negotiation by the European Parliament and the Council of the European Union, with the potential of being implemented in 2025 if passed.
The EIT Health report said this framework could bring various benefits to healthcare services across the EU, by giving more data to researchers who can treat diseases and improve healthcare delivery.
Elaine Murray, the public affairs lead at EIT Health Ireland and UK, said the EHDS could be a “gamechanger” for how healthcare is delivered and how health research is carried out in Ireland. But she noted that national measures need to be taken.
“For Ireland to move forward, a significant cultural change is required, transitioning from a focus on data protection to striking a balance between data protection and data sharing to further research that enables improved care for patients,” Murray said. “Investment in digital technologies will be required, as well as upskilling the healthcare workforce.”
How ready is Ireland?
The EIT Health report suggests that Ireland currently has a “fragmented health service landscape” for digital services, which means the funding requirements for each stakeholder are expected to vary.
The report said investment will be required to set up foundational digital infrastructures and large data platforms, while addressing the skills deficit in Ireland’s healthcare sector.
“Furthermore, there is currently a freeze on the recruitment of managers and administrators within the HSE,” the report said. “IT workers fall under this category, further impacting the ability of hospitals to attract much-needed skills.”
While Ireland has large pharma and medtech companies present that can benefit from the EHDS, the report said the country’s “vast” number of SMEs and start-ups would likely struggle to secure the funds to fulfil the obligation to provide access to their data, if the EHDS is passed.
The report also warned that Ireland’s public health system will need national funding for the digital upgrades required to implement this EU legislation. EIT Health said there has historically been a “lack of alignment” between the Department of Health and the Department of Public Expenditure when it comes to costs and implementation.
How can Ireland prepare?
The report lists various measures that both EU policymakers and Ireland’s Government should take to support the successful implementation of the EDHS. These recommendations are in six categories, including governance, data quality, resources and funding and capacity and skills.
For Ireland, some of the suggested measures include accelerating the roll-out of electronic health data records across its health system, creating a national strategy for health data, leveraging EU funding for full-scale implementation of the EHDS and taking steps to harmonise data standards to “avoid future interoperability-associated costs”.
The list of recommendations is large and the report noted that Ireland still has a reliance on paper records and that its healthcare workforce will need to be upskilled.
Sinead O’Connor, adjunct assistant professor at Trinity College Dublin, said each country is at a different stage of digital health record availability and that the EHDS “could be timely for Ireland”.
“Lessons can be taken from European neighbours that are further ahead on health data standardisation and management,” O’Connor said.
“As a hub for medtech and pharmaceutical companies, with a highly educated workforce and renowned academic institutions, Ireland could become a leader in innovation, utilising health data with sensors, nanotechnologies, genomics and artificial intelligence, enabling better treatments and patients’ self-management of their conditions.”
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