HealthData@IE – setting up health data access body services in Ireland
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About HealthData@IE
The Department of Health, in collaboration with HIQA and the Health Research Board (HRB), was awarded funding as part of the EU4Health programme to support the establishment of health data access body (HDAB) services in Ireland under the HealthData@IE project.

HealthData@IE is a project to support the implementation of the European Health Data Space (EHDS) regulation, which is a major health information initiative in all EU countries. One of the aims of the EHDS is to facilitate the use of anonymised and pseudonymised health data to help create a more efficient, innovative and responsive healthcare system that benefits everyone.

These benefits will be achieved by using data for research, innovation, policy-making, improved patient safety, education, preparing official statistics and carrying out regulatory activities. This is known as secondary use of health data.

Working with key stakeholders in the Health Service Executive (HSE) and across the health system, the HealthData@IE project focuses on the development of the national infrastructures  needed for secure and confidential access to health data. These include: a National Health Dataset Catalogue to enable data users, such as health researchers, find data they would like to work with; a Data Access Application Management System to process applications for access to data; and Secure Processing Environments where data users can work with health data under supervised conditions.

The EHDS will enable anonymised and pseudonymised health data to be used for the benefit of the public, professionals in health and care and society as a whole. The benefits include advances in medical research, innovations in medicines and healthcare technology, better public health policies and enhanced quality of care. 

In respect of this secondary use of data, the EHDS requires that EU Member States establish the services of one or more HDABs. A HDAB service securely connects data users with appropriate health care data to support their work. 

Through the HDAB, data users will be able to identify the data they would like to work with. They will then apply for access to that data. Following approval, they will have access to the data and be able to work with it under supervised conditions.

The EU regulation to establish the EHDS will be enacted into law in 2025. Different implementation deadlines fall between 2027 and 2031.
In Ireland, HealthData@IE is the project to set up HDAB services under the EHDS regulation and therefore enable better access to health data for secondary use.

HIQA is coordinating three programmes of work under the HealthData@IE project.

  • Engagement and education

This comprises a programme of work centred on raising awareness of the HDAB function and responsibilities among the public, data holders, such as healthcare professionals, and data users. An emphasis is placed on engaging effectively with members of the public, health and social care professionals and other relevant stakeholders on changes to how health information is collected, used and shared. Engagement will also comprise training and support initiatives for HDAB staff, data holders and data users.

  • National health dataset catalogue

This is a programme of work that aims to develop a National Health Dataset Catalogue (nHDsC) for the secondary use of data. This catalogue will be available on a central website which will also host a number of other digital solutions required for the establishment of HDAB services.

  • Health data quality enhancement

This programme of work focuses on enhancing the quality of data that will be made available through the HDAB. An emphasis is placed on supporting data holders to improve the quality of their data and prepare for the EHDS and the establishment of HDAB services in Ireland. This is to help ensure they can meet their obligations relating to the secondary use of data as part of the EHDS regulation.

The HealthData@IE project is co-funded by the European Union through the EU4Health 2021-2027 health programme, grant agreement EU4H-2023-JA-3-IBA-10. Further funding is through the Irish government.

Disclaimer
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Co-funded by the European Union. Views and opinions expressed are however those of the author(s) only and do not necessarily reflect those of the European Union or the European Health and Digital Executive Agency (HADEA). Neither the European Union not the granting authority can be held responsible for them.

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