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Ireland-UK, EIT Health Ireland-UK

EIT Health Ireland-UK publishes report – ‘Implementing the European Health Data Space in Ireland’

28th November 2023

New report sets recommendations on how to implement a Europe-wide regulation that aims to facilitate greater sharing of electronic health data across the EU.

 

EIT Health Ireland-UK, a Co-location Centre of EIT Health, which is part of the European Institute of Innovation and Technology, has published a new report titled ‘Implementing the European Health Data Space in Ireland.’ The report, which examines how ready Ireland is for the European Health Data Space (EHDS) regulation and sets recommendations for policymakers on how to move forward, was launched at an event at the European Parliament Liaison Office in Dublin yesterday.

On May 3 2022, the European Commission published its plans for the EHDS, a new framework which, if passed, aims to give citizens in Europe access to, and control over, their own digital personal health data, including when traveling within the European Union. Additionally, large anonymised health datasets will be made available across borders on request for research, innovation and policy-making. This means that scientists and researchers can develop solutions to help prevent, diagnose and treat diseases — and improve healthcare delivery. The regulation is currently under negotiation by the European Parliament and the Council of the European Union. If passed, implementation could begin in 2025.

A pan-European steering committee, coordinated by EIT Health, was established in early 2023 to assess member states’ readiness for implementation of the EHDS. Sinéad O’Connor, Adjunct Assistant Professor Emerging Technologies in Healthcare from Trinity College Dublin’s School of Medicine, is the Ireland representative on this steering committee. Eleven roundtables have taken place across Europe as part of the steering committee’s work, and reports per country are now being published based on findings.

In Ireland, EIT Health Ireland-UK hosted a national roundtable during the Irish Medtech Association’s Meeting of Minds event in Dublin in May 2023. Eleven experts from the fields of academia, clinical research, consulting, healthcare, industry and patient advocacy took part, and six additional stakeholders were interviewed from healthcare, medtech, and pharmaceuticals.

The published report for Ireland includes recommendations, based on stakeholder feedback gathered, such as:

  • Accelerate the rollout of electronic health records across the health system
  • Involve patients and citizens in EHDS governance bodies, and throughout the implementation process
  • Train those that will be interacting with health data by creating upskilling opportunities in areas such as data standardisation, data collection, storage and use
  • Set out quality data standards from the beginning so that Ireland could avoid future interoperability-associated costs other member states currently face

 

The EHDS could be a gamechanger for how healthcare is delivered, and how health research is carried out, in Ireland and across Europe,” said Elaine Murray, Public Affairs Lead at EIT Health Ireland-UK. Today’s report provides a blueprint for policymakers preparing for implementation. 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. Investment in digital technologies will be required, as well as upskilling the healthcare workforce.”   

Speaking at the launch event Sinead O’Connor Adjunct Assistant Professor, Trinity College Dublin said: “As each country is at a different stage of digital health record availability, the EHDS could be timely for Ireland, as lessons can be taken from European neighbours that are further ahead on health data standardisation and management. 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.”

The report published yesterday focuses on the secondary use of data for research and innovation, making recommendations across six dimensions of implementation: Governance; Capacity and skills; Resources and funding; Data quality; Closing the loop: The relationship between primary and secondary use; and Awareness, education and communication: Towards a data-driven culture in healthcare. These insights will feed into a wider pan-European report, to be published by EIT Health’s Central Office, in early 2024.

The launch event was attended by EIT Health Partners, academic, healthcare, and industry representatives. Panellists included: Sarah Gibney, Department of Health; Prof. Richard Greene, HSE; Sinead Keogh, Ibec; and Derick Mitchell, Irish Platform for Patient Organisations, Science and Industry (IPPOSI).

The Ireland report is available for download now.

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