Capacity Building on primary use of health data: Ireland's Digital Health Transformation
Introduction
The EU Commission and MyHealth@ EU have embarked on a transformative journey to enhance the healthcare systems of member states. The aim is to deliver a strong European Health Union in which citizens and healthcare professionals can exchange health data cross-border in member states by 2030. This Autumn, The European Health Data Space (EHDS) initiative funded a series of sessions throughout member states to share information on the status of interoperability and exchange of health data across the EU. The Ireland session (group photographed above) was held on September 26-27, 2024, at Iveagh House, Dublin. The event brought together European experts from various fields to share insights and strategies for achieving these goals.
Irish Twinning Masterclass
The Irish Twinning Masterclass was introduced by Dr. Alexander Berler, IHE (Integrating the Healthcare Enterprise), who outlined that the primary objective was to build capacity in the primary use of health data, focusing on interoperability and the digital transformation of health services in Ireland. The opening session was dedicated to Irish Digital Health Transformation. Muiris O’Connor, Assistant Secretary Department of Health, opened proceedings with a comprehensive briefing on the European Health Data Space Implementation in Ireland. Muiris addressed the Department’s strategy and plan to implement EHDS regulations in Ireland from legislative changes with the Health Information Bill 2024 through to key national deliverables to support EHDS implementation. Ronan O’Kelly, Assistant Principal, Department of Health, presented on “Digital for Care” and how this framework sets out a roadmap to digitally transform health services in Ireland and improve access for patients.
Digital for Care Framework
This session highlighted the importance of creating a robust digital infrastructure that supports the seamless flow of health information across different systems and stakeholders. Kathryn Kissane, Deputy Delivery Director, Engagement and Delivery, HSE, expanded on the “Digital for Care” framework, detailing how the HSE’s Digital Health Strategic Implementation Roadmap, its 6 principles and 48 initiatives, will enable this digital transformation while ensuring the key focus is centred on the patient. Kathryn confirmed the “Digital for Care” implementation plan is staged across three delivery timeframes and then discussed in detail the MyHealth@IE programme, providing updates on the National Shared Care Record and the HSE App initiatives and timeframes.
Clinical Terminology
The next session focused on Clinical Terminology. Theresa Barry, Clinical Terminology Architecture Lead, HSE, kicked off the session by providing an overview of the current state of clinical terminology and data standards in Ireland and of the progress made so far. She described the recent Data Capability Assessment Maturity (DCAM) survey conducted to evaluate Ireland's maturity in data standards. Key insights included the importance of collaboration among stakeholders in healthcare and the challenges posed by disconnected systems and vendor management.
Ireland's Adoption of SNOMED CT
Theresa highlighted the need for a unified vision, codesign, and a data-driven strategy to drive digital transformation. She also discussed the foundational elements needed for clinical terminology and data sharing in Ireland, emphasising the importance of capturing key medical information such as diagnoses, procedures, and family history. She highlighted the value of future-back planning—envisioning the future state of healthcare and working backward to identify necessary steps today. Emerging technologies like genomics and robotic surgery were noted as factors influencing future planning. Theresa then reviewed Ireland's journey in adopting SNOMED CT, including her role in setting up the National Centre (NRC) and developing 20 reference sets. She also mentioned ongoing efforts to procure a Central Terminology Service, which she believes will be transformative for data integration.
Data Specification Management Process (DSMP)
Yvonne Coughlan, Business Analyst and DSMP Coordinator, then presented on the Data Specification Management Process (DSMP) and its importance in promoting standardised data practices among healthcare professionals. The DSMP helps organisations prepare data sets for review, enabling effective healthcare delivery through accurate and timely information. The process aims to unify stakeholders and improve the management of data specifications, ensuring accurate and standardised data collection from the outset. By fostering collaboration among subject matter experts, the process enhances service planning, analytics, and reporting, aiming for high-quality data outputs that can eventually be made available through APIs in the Clinical Terminology Service (CTS). Examples highlighted included the National Ambulance Service and the National Nursing Transfer Document, showcasing ongoing efforts to enhance data standardisation and electronic health records.
National Medicinal Product Catalogue
The third presenter in the session was Shane Byrnes, Clinical Lead for the National Medicinal Product Catalogue (NMPC). The development of the NMPC was highlighted as a significant milestone for data standardisation in Ireland. Shane presented on how the NMPC catalogue will standardise the terminology, classification, and identification of medicinal products, enhancing patient safety and the efficient use of healthcare data. The NMPC supports various use cases, including electronic prescribing, medication reconciliation, and formulary management. The key benefits of the NMPC include improved patient safety through standardised medication information, enhanced use and re-use of healthcare data and better patient and healthcare worker experience. Joanna Hand, Senior Pharmacist from the NMPC team, then discussed their experiences in developing the editorial guide and data model for the catalogue, the authoring process, and the quality assurance required for medicinal information, and summarised the key learnings from this initiative to date.
Dentistry Reference Set
Day 1 concluded with an insightful discussion from Professor Anthony Roberts, Cork University Dental School and Hospital, on a clinician’s experience in developing an Irish reference set for dentistry. Professor Roberts discussed the programme drivers, engagement with stakeholders and the SNOMED CT Team, the development of their specific reference set and the key benefits and findings from their initiative to date.
Data Interoperability and MyHealth@EU (Day 2)
The key focus of Day 2 was on Data Interoperability and MyHealth@EU. Interoperability is a cornerstone of the digital health transformation. Eamon Coyne, Assistant Principal, Department of Health, presented on the key challenges and solutions to address interoperability and the exchange of patient health data. The MyHealth@EU team has developed a use-case approach to interoperability based on international specifications and tested this use case approach in multiple EHDS projectathons and test events. Eamon addressed the development of interoperability specifications in the HSE, test plans, and test tools to ensure seamless data exchange across different healthcare systems.
Irish Test Harness and Interoperability Testing
Patrick Marren, HSE MyHealth@EU Team Lead, then presented on the Irish Test Harness, a key solution for testing and validating interoperability specifications. The Test Harness includes simulators, validators, and other tools to ensure that systems can communicate effectively and securely and is used extensively throughout the HSE. Patrick detailed the process for engaging and commissioning tests and was followed by Duncan Falconer of the MyHealth@EU team, who gave a handson demonstration of building and running test scripts. Duncan demonstrated how to create and edit a patient summary CDA template, upload this into the test harness, and then test and validate the script. Duncan’s discussion on using AI in coding and script development generated much discussion from both the on-site and online audiences.
International Developments
Dr. Berler from IHE then presented on the international developments with interoperability specifications, IHE Profiles, and HL7 FHIR testing with specific reference to recent interoperability testing in France, Greece and Switzerland. He discussed the pending regulations on EHR Certifications and how building an international healthcare interoperability lab using the IHE methodology facilitates EHR testing and certification. The final session was about Enabling Patient Access to Data, and was delivered by Professor Zoltan Lantos, Department of Health, who discussed empowering patients, and why giving patients access to their own health data is a central theme of digital health transformation. The MyHealth@EU initiative includes the development of a patient portal and mobile app that allow patients to access their health records and share them with healthcare providers across the EU. This initiative aims to enhance patient engagement, improve care coordination, and reduce clinical risks.
Conclusion
The Masterclass concluded with a discussion on the future directions of the digital health transformation in Ireland. Key priorities include the continued development of the digital health infrastructure, the implementation of the EHDS, the importance of delivering structured coded data, and the expansion of patient access to health data. By leveraging digital technologies and data, Ireland aims to create a more efficient, patient-centred healthcare system that can meet the challenges of the future. The insights and strategies discussed during the Ireland Twinning Masterclass provide a roadmap for achieving these ambitious goals, highlighting the importance of collaboration, innovation, and continuous improvement.
