The Health Information and Quality Authority (HIQA) has today published an international review of approaches to registries in health and social care. The review was requested by the Department of Health to inform national policy in this area.

Registries in health and social care are organised systems that collect data on people with a particular disease or condition, such as the National Cancer Registry Ireland. This data is used to improve medical care, study disease patterns and evaluate the effectiveness of treatments. This review examines how six European countries manage registries in terms of governance arrangements, the maturity of systems, approaches to prioritisation and plans for the future. 

This publication comes at an important time in the use of secondary health data at an EU level, with the European Health Data Space (EHDS) Regulation entering into force in March 2025. 

Nationally, this review also comes at a time of significant digital health transformation as Ireland’s health sector works towards implementing the Department of Health’s digital health strategy, Digital for Care: A Digital Health Framework for Ireland 2024-2030. 

Commenting on the review, HIQA’s Director of Health Information and Standards, Rachel Flynn, said: “Ireland is at a key point in its journey towards digital health transformation. This international review highlights the key requirements to support the secondary use of data, such as good governance and oversight, adequate infrastructure to support the use and re-use of data, and public trust in systems.” 

“Learnings from this international review will help to inform Ireland’s ongoing development of its health information system to ensure health data for secondary use, including registries data, is available as required to relevant stakeholders such as decision-makers, policy-makers and researchers. This, in turn, will support compliance with the EHDS Regulation as it is implemented over the coming years.”

Key findings from this international review highlight a number of features that comprise a mature system of registries in health and social care in the countries reviewed. These include:

• clear governance structures and well-defined roles and responsibilities with regard to both the provision and collection of data for registries
• coordinated oversight of all registries to provide assurances with regard to how they are being managed and the quality of the data
• legislation that sets out the legal basis for registries and the roles and responsibilities of all parties
• a structured process to identify and prioritise data needs of key stakeholders such as health and social care professionals, national-level decision-makers and policy-makers
• adequate infrastructure to support the secondary use of data
• the optimising existing data sources to facilitate analysis and produce health statistics
• using a unique identifier to facilitate individual-level data linkage
• engaging with the public to build and improve public trust in the collection, use and sharing of data.

Further information:

Caoimhe O’Connell 
Communications Manager
087 639 5916
caoconnell@hiqa.ie 

Notes to the editor:

• This international review is the first of three publications planned to inform policy in this area for Ireland. The second will be an analysis of the current health and social care registries’ landscape in Ireland. This will be followed by a roadmap and prioritisation criteria for the future of Ireland’s registries.
• The approach to registries in Wales, Estonia, Finland, Sweden, Denmark and Belgium was examined as part of this international review.
• The EHDS Regulation aims to create a standardised health data space across the EU, allowing individuals to control and utilise their health data at home or in other Member States. It also aims to enhance the use of data for secondary purposes across the EU by making it possible for researchers, innovators and policy-makers to use this data in a trusted and secure way that preserves privacy.
• Under the EHDS Regulation, data holders are obliged to make specific categories of data available for secondary use. As set out in Chapter IV of the Regulation, there are 17 categories of data for secondary use, three of which relate directly to registries. These three categories are: population-based health data registries (public health registries), data from medical registries and mortality registries and data from registries for medicinal products and medical devices.