Info

Coordinating Institution
Department of Health - Ireland
Contact person for health information portal
Michael Courtney
Department of Health - Ireland
Governance and legal framework
Legal framework and institutional responsibilities

Health data in Ireland are governed by the General Data Protection Regulation (GDPR), the Data Protection Act 2018 and the Health Research Regulations 2018 [link/] https://www.hrb.ie/funding/gdpr-guidance-for-researchers/health-research-regulations-2018/[/]. The Department of Health has overall responsibility for health policy. Policies are implemented to a range of public sector organisations, primarily the Health Service Executive, which, in conjunction with the Health Protection Surveillance Centre (HPSC) [link/] https://www.hpsc.ie/[/], has a key role in collecting primary data on the prevalence and incidence of health conditions. However, there is no centralised health information system with responsibility for primary care and its associated data lies with independent General Practitioners. The Data Sharing and Governance Act 2019 regulates the sharing od data between public bodies. However, the act excludes the sharing of special categories of data such as Health data. The Statistics Act 1993 permits the sharing of data with Central Statistics Office for the purpose of compiling official statistics.

COVID-19

While there is no official National Node for COVID-19 data in Ireland, the COVID-19 Data Coordination Group meets weekly to manage the data collection and dissemination of statistics related to COVID-19 cases and vaccinations on the COVID-19 data hub. The group includes the Department of Health (Ministry), Central Statistics Office (National Statistics Institute), Health Service Executive, Health Protection Surveillance Centre, Health Care Pricing Office, Ordinance Survey Ireland, National Office of Clinical Audit and the Economic and Social Research Institute.

Health information strategy

The Department of Health will seek Government approval for the development of Health Information Legislation in early 2022.

Health information sources and players
Main players (institutions)

The main institutions with responsibility for health data are the Department of Health, Health Service Executive, Central Statistics Office, Health Protection Surveillance Centre, Health Information and Quality Authority, Health Research Board and Cancer Registry.

Data protection
National data/privacy protection regulation and specific data access policies

The Health Research Consent Declaration Committee (HRCDC) [link/] https://hrcdc.ie [/] was established as part of the Health Research Regulations made under the Data Protection Act, 2018. The purpose of those Regulations is to support health research and promote necessary and desirable public confidence in such research. The Regulations provide for a statutory consent declaration process. That enables a data controller carrying out health research using personal data to apply for a consent declaration, meaning that the consent of the individual is not required for the obtaining and use of his or her personal information for the health research concerned. In order that such applications are carefully considered from a range of perspectives, the Health Research Regulations provide for an independent and representative committee to make decisions on those applications – that is the role of the HRCDC.

Health information infrastructure and management
Health information infrastructure and management

Health data are managed by a multitude of institutions. A comprehensive list of health data collections and the responsible organisations can be found at the Health Information and Quality Authority website here [link/] https://www.hiqa.ie/areas-we-work/health-information/data-collections[/].  Data related to COVID-19 including testing, cases and case profiles, hospitalisations, Intensive Care Unit (ICU) admissions, and vaccinations are managed by the Health Service Executive and Health Protection Surveillance Centre. These statistics are presented on Ireland's COVID-19 data hub [link/] https://covid-19.geohive.ie/[/]

Existence of a unique patient identifier or general personal identifier?
Yes
Name of identifier
The Health Identifiers Act 2014 established a legal basis for implementing an individual health identifier (IHI). Further information on Ireland's implementation of the IHI can be found here https://www.hse.ie/eng/about/who/national-services/individual-he
Updated on 27 January 2022