Data for Care webinar highlights progress on standards, interoperability and health information legislation

The latest Data for Care webinar, held on 26 March 2026, brought together colleagues from the HSE, SNOMED International and the Department of Health to share progress on data standards, interoperability and the policy and legislative changes shaping digital health in Ireland. The session followed the Data for Care event held in January 2025 and continued the conversation on how strong data foundations support safer, more connected and more effective care.

Opening the webinar, Theresa Barry, Chief Data and Analytics Office, HSE Technology and Transformation, welcomed attendees and outlined the purpose of the series. She noted the strong interest in previous sessions and said the webinars will continue through 2026 to keep people informed about progress in this area. The focus of this session was on how data standards work within an API-based architecture, how different international standards connect, and how national legislation is evolving to support this work.

A key theme throughout the webinar was that Digital for Care depends on good quality, well-structured and shareable data. As Ireland progresses major digital programmes, including work towards a national electronic health record, the session reinforced that data standards are not a technical add-on. They are central to how information is recorded, exchanged and used to support care.

Building the foundations: data standards and API architecture

In the first presentation, Theresa Barry set out why data standards matter and how API-enabled systems can improve the way health information is recorded and shared. She explained that older messaging approaches have supported point-to-point exchange of information, but newer standards such as FHIR offer much greater flexibility and support a more connected model of care.

She described the pressure many staff are already feeling as digital programmes, policy developments and legislative requirements all move forward at pace. Against that backdrop, Theresa highlighted the role of the HSE’s data standards function in supporting interoperability, data quality, consistency and better decision-making. The overall aim is to make it easier to combine and use information from different systems while reducing duplication, errors and manual effort.

A significant part of her presentation focused on lessons learned from existing digital health systems. While electronic records are often seen as the answer to better documentation and better outcomes, Theresa noted that this is not automatic. Poor system design can lead to checkbox fatigue, documentation burden, data silos and poor usability. Her message was that Ireland has an opportunity to learn from that experience and take a more modern approach from the outset.

She outlined how a combination of standards and tools can support this, including FHIR for messaging, SNOMED CT for clinical terminology, ICD-10-AM for reporting and analytics, LOINC for laboratory data, Open EHR for data storage and the HSE Data Dictionary as a metadata catalogue. Used well, these standards can support more structured documentation, better search and retrieval of information, and stronger interoperability across systems.

Theresa also shared progress on national infrastructure now being put in place. This includes a central terminology server, monthly releases of Irish SNOMED content, and work through the HSE data specification management process to support standardisation centrally and make validated content available to downstream systems through APIs. This approach is intended to help the health service manage critical data assets more consistently at national level.

How standards work together in practice

The second presentation was delivered by Suzy Roy of SNOMED International, who spoke about the role of SNOMED CT as a reference terminology and as part of a wider ecosystem of standards. Her presentation responded directly to feedback from previous webinars, where attendees had asked to hear more about how different standards connect and work together.

Suzy explained that SNOMED International is a not-for-profit organisation governed by its member countries, including Ireland, and that this membership model helps shape priorities based on real national needs. She outlined how SNOMED International works closely with other standards bodies and professional organisations to support implementation in practice, including collaborations with HL7 International, IHE, ISO, and others.

A clear message from her presentation was that no single standard can do everything on its own. Instead, effective digital health depends on a standards ecosystem, where different standards each play a role in capturing, organising and exchanging health information. In that model, SNOMED CT acts as an important reference point, helping connect clinical terminology with messaging standards, classifications and other technical specifications.

She gave practical examples of this approach, including work on the International Patient Summary and collaboration around rare disease content through Orphanet. These examples showed how shared standards and mappings can allow different systems to work together without forcing everyone into a single code set or single system design. That kind of alignment is particularly important as health information needs to move more easily across settings, organisations and borders.

For Ireland, the relevance is clear. As national digital programmes expand, membership of organisations such as SNOMED International means the country can build on work that has already been done internationally, rather than developing everything from scratch. This supports faster progress, stronger alignment with international good practice, and better readiness for future requirements.

Legislative progress: the Health Information Bill and the European Health Data Space

The final presentation came from Helen Conroy of the Department of Health, who provided an update on the Health Information Bill and the wider implementation of the European Health Data Space (EHDS). She explained that the bill is the first in a wider suite of legislative measures that will help deliver on Ireland’s national health information policy and meet EHDS requirements.

Helen outlined how the EHDS introduces new rights for patients in relation to access, control and portability of their personal electronic health data, while also supporting better access to information for healthcare professionals involved in care and treatment. The regulation also provides a framework for the secondary use of health data for purposes such as research, policy development and public health.

She described the phased timeline for EHDS implementation, with different application dates running from March 2027 to March 2031, and noted that this reflects the scale and ambition of the work involved. She also set out the wider legislative roadmap, which includes the Health Information Bill, statutory instruments to give effect to mandatory EHDS provisions, and further legislation in 2027 to support national health data access for secondary use.

A central feature of the bill is the proposed duty to share health information for patient care and treatment. Helen explained that this is designed to move away from the current situation where a healthcare provider may not have access to all the information needed to understand and treat a patient. Importantly, this duty would apply across public, private and voluntary settings.

She also outlined the provisions supporting the creation and use of an electronic health record for all patients, with information drawn together from across care settings. This would support not only direct care, but also better service planning and management in the public interest. Patients would have rights in relation to their records, including access to information about who has viewed their record and the ability to seek rectification where needed.

Helen highlighted that the proposed contents of the electronic health record are aligned with the patient summary categories set out under the EHDS. These include core information such as diagnoses, medications, allergies, procedures, care plans and rare diseases. She also noted the inclusion of national policy requirements, such as alignment with PPSN and Eircode where appropriate, to support patient identification and safety.

In closing, Helen gave an update on the bill’s progress through the Oireachtas, noting that it was awaiting final stages in the Seanad, followed by return to the Dáil and then signature by the President. Her presentation made clear that legislation, standards and digital infrastructure are increasingly moving in step.

A shared direction for Digital for Care

Across all three presentations, there was a strong sense of alignment between national policy, international standards and the practical work underway across the health service. The webinar highlighted that delivering on Digital for Care is not only about new systems. It is about putting the right building blocks in place so that health information is structured, trusted, shareable and usable.

The session also reinforced the scale of the work ahead. As Theresa Barry noted in her closing remarks, the health service must be ready not just for the idea of sharing information, but for the reality of doing it well. That means ensuring the right standards, governance, tools and supports are in place across the system.

With strong interest in the webinar series continuing, further sessions are planned later this year. Together, they are helping build awareness and understanding of the data foundations needed to support safer care, better services and a more connected digital health system for Ireland.

Watch the webinar here