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FAQ

This page contains a list of general FAQs as well as those specifically aimed at researchers. If your question is not answered here, please contact the RDGB Secretariat and the CSO Researcher Liaison for provisional advice on available data and CSO safeguards and protocols in advance of application submission. Email: HealthRDC@cso.ie

General FAQs

What is the Health Research Data Centre?

The Central Statistics Office (CSO) hosts a secure Health Research Data Centre which allows researcher access for health research under the Health Research Regulations. The available data consists of individual level (both persons and businesses) survey data collected by the CSO and administrative data sets obtained from various government departments and agencies. 

What is the Research Data Governance Board (RDGB)?

The RDGB is an independent body established jointly by Health Research Board (HRB) and the Central Statistics Office (CSO), in close collaboration with the Department of Health (DoH). The Board acts as a central point for applications received and is a key safeguard in this new mechanism to facilitate access to data in the Health Research Data Centre. The RDGB will undertake screening, review and prioritisation of data requests prior to applications being assessed by the CSO. They will oversee a transparent process to facilitate secure and controlled access by researchers to CSO data for statistical purposes. The RDGB Secretariat is provided by the CSO and supports the RDGB in all aspects of its work but has no input in its decision making. Read more information on the RDGB here.

What researchers will have access to the information?

Only registered researchers from registered research organisations in Ireland can apply to access the Health Research Data Centre for valid health research purposes. Applications for access will not be considered from commercial bodies.

What does the application process involve?

Researchers applying to access the Health Research Data Centre will go through a robust application process. Separate approvals from the Research Data Governance Board, Research Ethics Committee(s), and a consent declaration from the Health Research Consent Declaration Committee will be needed before the Central Statistics Office (CSO) will consider final approval. The Director General of the CSO will only then make a determination as to whether the research project is in the public interest and within the scope of the Statistics Act, 1993.

What is the legal basis upon which researchers can access CSO held data?

The legal basis for access to CSO held data is under Section 20(c) of the Statistics Act, 1993, and the Data Protection Act 2018/Health Research Regulations 2018

Will approved researchers be able to see personal information within the datasets?

No. All direct identifiers such as names, addresses and date of birth will have been removed. This process is referred to as pseudonymisation. Additionally, once in receipt of the data, the Central Statistics Office (CSO) converts the identifier numbers in each dataset that remain to a Protected Identifier Key (PIK). The PIK is a unique and non-identifiable number which is internal to the CSO. Using the PIK enables the CSO and approved researchers to link and analyse data for statistical purposes, while protecting the security and confidentiality of the individual data.

What is being done to protect an individual’s data protection and privacy rights?

Only registered researchers from registered research organisations in Ireland are permitted to apply for access to these data. Researchers applying to access the Health Research Data Centre will go through a robust application process.
Separate approvals from the Research Data Governance Board, Research Ethics Committee(s), and a consent declaration from the Health Research Consent Declaration Committee will be needed before the Central Statistics Office (CSO) will consider final approval. The Director General of the CSO will only then make a determination as to whether the research is in the public interest and within the scope of the Statistics Act,1993.

Does the Central Statistics Office (CSO) share data with any third parties?

Access to safe, pseudonymised, personal data held in the Health Research Data Centre is restricted to nominated CSO staff and approved researchers. The CSO never shares any personal data with any third parties, whether they are private entities or commercial operations.

Is my personal data confidential?

All information supplied to the Central Statistics Office (CSO) is treated as strictly confidential. The Statistics Act, 1993 sets stringent confidentiality standards: information collected may be used only for statistical purposes and no details that might be related to an identifiable person may be divulged to any other government department or body.

Where is the data stored?

The Central Statistics Office (CSO) collects data from CSO surveys and administrative data from government departments and agencies. All relevant data is processed, pseudonymised and stored securely on CSO servers. As governed by the CSO Data Management Policy, the data flows are stored in the Administrative Data Centre (ADC) warehouse.

What technical safeguards are in place for researcher access?

Approved researchers gain access to data via the Central Statistics Office (CSO) Researcher Data Portal (RDP). The CSO technology in facilitating secure access to microdata is in keeping with best practice internationally. The RDP is a locked-down Citrix environment from which no data can be extracted without the approval of the CSO. The researcher logs on using a unique username, PIN and password. The microdata always remains on a CSO server. The RDP was developed under the headings of the Five Safes:

  • Safe Projects (RMF approval process),
  • Safe People (Researcher and Research Organisation registration process), 
  • Safe Settings (RDP security), 
  • Safe Data (RMF construction in compliance with CSO Statistical Disclosure Control policy) and 
  • Safe Outputs (Outputs checked in accordance with CSO Statistical Disclosure Control policy by Data Custodian) 

Do researchers in other countries have similar access to health information?

Yes. The infrastructure which this initiative introduces is modelled on best international practice and has been available in the UK, most European countries, Canada, Australia and New Zealand. It aims to maximise the value of national data sets - particularly in the area of health where there is much sensitive data.

Has a Data Protection Impact Assessment (DPIA) been prepared? 

Yes, to ensure compliance with the General Data Protection Regulation, a DPIA has been prepared and approved by the Data Protection Officer (DPO) and it could be found here

Has there been consultation with the Data Protection Commissioner’s Office?

Yes, there has been consultation with the Data Protection Commissioner’s Office, who are satisfied with the Health RDC infrastructure and approach, subject to the implementation of the relevant Data Protection Impact Assessment and the safeguards outlined therein.

Have individuals given their consent to this use of their data? 

Individuals have not given their consent for the use of their data that is held within the Health Research Data Centre, for health research purposes. To seek such consent would not be practicable or possible for researchers.
As explicit consent from an individual is a mandatory safeguard under the Health Research Regulations, all researchers must therefore apply to the Health Research Consent Declaration Committee (HRCDC) for a lawful consent declaration where explicit consent of the individual is not possible or practicable, and where the public interest in carrying out the research significantly outweighs the public interest in requiring the explicit consent of the individual.
A consent declaration shall only be made by the HRCDC for a research study, when it is satisfied that all the data protection safeguards and technical and organisational measures have been met, and the public interest in carrying out the health research significantly outweighs the public interest in requiring the explicit consent of the individual who owns the personal data. For further information on the HRCDC, please visit their website.

Researcher FAQs

Who can apply for access to the health Research Data Centre?

Access to the CSO Health Research Data Centre is restricted to registered researchers from registered research organisations in Ireland. Applications for access will not be considered from commercial bodies.

Read more about the registration process

Read more about the application process, and Download application form.

How do researchers begin the application process to the Health Research Data Centre?

Applicants should contact the CSO’s dedicated Researcher Liaison prior to preparing and submitting their application to the RDGB Secretariat for review. The Liaison can provide provisional advice on matter such as availability of data flows, data sets and data variables, CSO safeguards and protocols, and project feasibility. Please contact the CSO Researcher Liaison at HealthRDC@cso.ie

As well as approval from the Research Data Governance Board (RDGB), do I require any separate approvals?

Yes. Only applications approved by the RDGB and where evidence of Research Ethics Committee (REC) approval and Health Research Consent Declaration Committee (HRCDC) approval is received by the RDGB will be recommended to be reviewed by the Central Statistics Office (CSO). The CSO issues final approval for access to relevant data. 

Read more about the , and Download application form.

Why do I need a consent declaration to access the Health Research Data Centre?

As explicit consent is not the legal basis for processing Researcher Microdata Files (RMFs) for health research but is a mandatory safeguard under the Health Research Regulations, all RMF researchers must apply to the Health Research Consent Declaration Committee (HRCDC) for a consent declaration. A consent declaration shall only be made by the HRCDC when it is satisfied all data protection safeguards and technical and organisational measures have been met, and the public interest in carrying out the health research significantly outweighs the public interest in requiring the explicit consent of the individual who owns the personal data. Apply for a consent declaration from the HRCDC. 

Who grants access to the data in the Health Research Data Centre?

While the Research Data Governance Board (RDGB) acts as a central point for application receipt, screening, review and prioritisation of data requests, it is the CSO that grants access to the data. The data is stored in the source tier of the CSO Administrative Data Centre (ADC) and made available to researchers by the Researcher Coordination Unit (RCU) via the Researcher Data Portal (RDP). Only designated Officers of Statistics can access the Researcher Microdata Files (RMFs). It is the Director General of the CSO who makes the final determination as to whether or not the research is in the public interest and within the scope of the Statistics Act,1993. 

What is the legal basis for processing data for health research?

The legal basis for processing of personal health data as contained in the Health Research Data Centre is permitted under Article 6.1.e, (the performance of a task carried out in the public interest). Health data is considered a special category of personal data and therefore a condition under Article 9 must be met. For health research purposes, this is generally Article 9(2)(i) and (j) of the General Data Protection Regulation (GDPR).

How is health research defined?

Health research is defined according to the Health Research Regulations 2018 (Regulation 3(2)(a)) as scientific research for purpose of human health and encompasses and of the following:

  • research with the goal of understanding normal and abnormal functioning, at molecular, cellular, organ system and whole body levels; 
  • research that is specifically concerned with innovative strategies, devices, products or services for the diagnosis, treatment or prevention of human disease or injury; 
  • research with the goal of improving the diagnosis and treatment (including the rehabilitation and palliation) of human disease and injury and of improving the health and quality of life of individuals; 
  • research with the goal of improving the efficiency and effectiveness of health professionals and the health care system; 
  • research with the goal of improving the health of the population as a whole or any part of the population through a better understanding of the ways in which social, cultural, environmental, occupational and economic factors determine health status;

Is data anonymised or pseudonymised?

The data is pseudonymised. All direct identifiers such as names and addresses are removed by Central Statistics Office (CSO). Additionally, once in receipt of the relevant data, the CSO converts the identifier numbers in each dataset that remain to a Protected Identifier Key (PIK). The PIK is a unique and non-identifiable number which is internal to the CSO. Using the PIK enables the CSO and approved researchers to link and analyse data for statistical purposes, while protecting the security and confidentiality of the individual data. 

What datasets are included in the Health Research Data Centre?

In the context of planning and improving the health services in Ireland, all the social and demographics data that CSO collects will be made available for researcher access. In exceptional circumstances, a case can be made to access business data.
The list of available data will be regularly updated and can be found in the RMF register.

I am interested in data that is currently not listed as available for access through the Health RDC. Can the data be made available?

Please email the details of the data that you are interested in to HealthRDC@cso.ie. While the CSO cannot guarantee that it will accommodate your request, the possibility will be investigated. 

I have further questions that are not addressed here. Who can I contact?

Questions relating to application process please email to RCU@cso.ie 
Any other questions please send to HealthRDC@cso.ie