Ireland’s new Health Information Bill opens door to digital health revolution [Advocacy Lab Content]

In a significant move towards digital transformation, Ireland’s Minister for Health, Stephen Donnelly, has unveiled the Health Information Bill 2024. This landmark legislation, once enacted, will lay the legal groundwork for digital health records in Ireland.

The Health Information Bill is designed to empower patients by providing them with easier access to their health information. This increased transparency will enable patients to make more informed decisions about their health and care, fostering a patient-centric approach to healthcare.

The Bill also provides a clear legal basis for the establishment of a Digital Health Record for people in Ireland. This initiative will allow for greater patient access to their health information, facilitating the sharing of care records in support of integrated care.

European Health Data Space

The legislation aligns with the European Health Data Space (EHDS) Regulation, which is set to come into force in autumn 2024. The EHDS aims to foster health data exchange and support research on new preventive strategies, treatments, medicines, medical devices and services.

Elaine Murray, Public Affairs Lead, EIT Health Ireland-UK, told Euractiv: “Successful implementation of the European Health Data Space relies on the standardisation of electronic health record systems across Europe. As part of EIT Health’s Think Tank, a pan-European expert group conducted research across eleven countries in Europe last year to assess member states’ readiness for implementing the EHDS framework.”

Murray added “In Ireland, we found that digital maturity is at an early stage. The Health Information Bill, published by the Department of Health (…) is a major step forward in preparing Ireland’s healthcare system to align with the forthcoming EHDS framework.”

Digital care agenda

The Health Information Bill is a crucial component for the successful implementation of ‘Digital for Care: A Digital Health Framework for Ireland 2024 – 2030’, launched earlier this year. The Bill empowers the Health Service Executive (HSE) to consolidate health information from across care settings – public, private, and voluntary – for the development and deployment of digital health records for all patients.

Minister Donnelly emphasised the importance of integrated care, stating, “Integrated care as envisioned in Sláintecare, needs the right information, in the right place, at the right time. The Health Information Bill gives patients greater access to their own information so they can make informed decisions about their health and care options. It also enables health professionals to have a more complete, holistic view of the patients they are treating.”

Murray explained: “The Bill sets out plans to establish Digital Health Records and sharing of care records in support of integrated care. With greater transparency and access to health information, patients receiving care in Ireland could be empowered to monitor or self-manage their conditions. Clinicians could use data for faster diagnoses, to improve wait times across the system.”

She remarked that “Under the vision of the EHDS, greater access to anonymised health data will facilitate evidence-based research into diseases from diverse datasets, accelerating the pace of innovation into new treatments, and overall better-informed public health decision making.”

Improved care efficiency

The Bill is expected to enhance access to health information for both patients and healthcare providers, leading to improved care efficiency, health outcomes, and overall health system performance.

Minister Donnelly added, “This legislation supports our national preparations for implementation of the EU Regulation on the EHDS which will come into force in autumn. This will transform how we access and use health information for care and treatment, as well as for important secondary-use purposes such as research and innovation. By harnessing digital, and unlocking the power of quality data, we are laying the foundations for an innovative, efficient, and truly modern health service.”

The Minister expects to progress the Bill through the Houses of the Oireachtas (Irish parliament) in the autumn legislative session.

Further legislative measures are planned in the months and years ahead to give full effect to the policy intent of the approved General Scheme of the Bill and to meet EHDS implementation deadlines which fall in 2026-2030.

[By Brian Maguire | Euractiv’s Advocacy Lab ]

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