FAQs

This page gathers a range of the most frequently asked questions on accessing the COVID-19 Data Research Hub for research purposes. Find below a list of general FAQs, and one with FAQs specifically aimed at researchers.

If your question is not answered here, please contact the RDGB Secretariat: COVIDDataHub@hrb.ie

Additionally, there is a Central Statistics Office (CSO) Researcher Liaison for provisional advice on available COVID-19 data and CSO safeguards and protocols in advance of application submission. Contact: Sanela Smith, CSO Statistician. Email: c19researchinfo@cso.ie

General FAQs

The Central Statistics Office (CSO) has a COVID-19 Information Hub on its website which hosts all COVID-19 related releases and publications. Separately, and in accordance with the Statistics Act, 1993, the CSO also hosts a secure COVID-19 Data Research Hub which contains individual level administrative data sets obtained from the Health Service Executive (HSE).
The datasets within the Research Hub contain pseudonymised individual level data on those who have been diagnosed with COVID-19, referred for testing, treated in hospital for COVID-19 or have been identified as being a close contact of a confirmed case.

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Previously, only certain Central Statistics Office (CSO) staff had access to this data for statistical purposes and it was shared with named individuals involved in the Irish Epidemiological Modelling Advisory Group (IEMAG) of the National Public Health Emergency Team (NPHET).  After extensive consultation, the Health Research Board (HRB) is collaborating with the Department of Health (DoH), and the CSO to make this data available for research purposes. Now, registered researchers from registered research organisations can now apply to access this pseudonymised data after a rigorous application process. Central to this initiative is the establishment of the Research Data Governance Board (RDGB).

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The RDGB is an independent body established jointly by Health Research Board (HRB) and the Central Statisitcs Office (CSO), in close collaboration with the Department of Health (DoH). The Board acts as a central point for application receipt and is a key safeguard in this new mechanism to facilitate access to data in the COVID-19 Data Research Hub.The RDGB will undertake screening, review and prioritisation of data requests prior to applications being assessed by the CSO, and will oversee a transparent process to facilitate secure and controlled access to this COVID-19 data for research. The RDGB Secretariat is provided by the HRB and supports the RDGB in all aspects of its work. Read more information on the Research Data Governance Board

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Health research plays an important role nationally and internationally during the current public health emergency. From rapid reviews of existing evidence to expedited research projects and clinical trials of new treatments and vaccines, Ireland is playing a key role on the international stage, facilitated greatly by the work and support of the Health Research Board (HRB). Using the best available research evidence and data to guide public health and health systems decisions is integral to an effective and efficient response in public health emergencies. Enabling approved research projects involving the processing of relevant COVID-19 data for statistical purposes in compliance with the Statistics Act and data protection law can ensure that researchers have the potential to enhance our understanding of the epidemiology, progression (or decline) and implications of this disease in Ireland and internationally and guide optimal interventions and decision-making.  

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Researchers have an important role to play during the current public health emergency. Facilitating researcher access to these data allows for research enabling linkage of health  data that could support clinicians, service managers and policy makers further understand and better tackle COVID-19. For example, trends and associations between COVID-19 interventions and patient outcomes might be identified, as well as the cost effectiveness and impact of such interventions. This data sharing is also expected to inform evidence-based decision-making and public policy in Ireland during the pandemic.
 

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Only registered researchers from registered research organisations in Ireland can apply to access the COVID-19 Data Research Hub for valid research purposes. Applications for access will not be considered from commercial bodies.

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Researchers applying to access the COVID-19 Data Research Hub 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.

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The legal basis for this is Section 20(c) of the Statistics Act, 1993, and the Data Protection Act 2018/Health Research Regulations 2018. Read about the legislation in full
 

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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 Health Service Executive (HSE) 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.

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Only registered researchers from registered research organisations in Ireland are permitted to apply for access to these data. Researchers applying to access the COVID-19 Data Research Hub 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.

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Access to personal data held in the COVID-19 Data Research Hub 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.

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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.  

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The Central Statistics Office (CSO) is accepting multiple data flows from the Health Service Executive (HSE) during the COVID-19 pandemic. The incoming 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.

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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. As well as this, the researcher’s access may be restricted to a specific IP address. The microdata always remains on a CSO server. The RDP was developed under the headings of the Five Safes:

  1. Safe Projects (RMF approval process), 
  2. Safe People (Researcher and Research Organisation registration process), 
  3. Safe Settings (RDP security), 
  4. Safe Data (RMF construction in compliance with CSO Statistical Disclosure Control policy) and 
  5. Safe Outputs (Outputs checked in accordance with CSO Statistical Disclosure Control policy by Data Custodian)
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There will be a post pandemic review which may make certain recommendations regarding the duration of the data storage element for COVID-19 related data sources.

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Yes, the Central Statistics Office (CSO) will host vaccine data when the database is available from the Health Service Executive. As with all researcher data, there is a time gap between data availability and the ability to share it given the stringent data protection protocols involved. The CSO also provides documentation describing the data to researchers which can take some time to prepare for new data sources.
 

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Yes. Ireland has lacked the infrastructure and services required to support an environment that exploits health information to its full potential and so is an outlier in this area. The type of infrastructure which this initiative proposes is modelled on best international practice and has been available for many years 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.

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Yes, to ensure compliance with the General Data Protection Regulation, a DPIA and a Transparency Notice have been prepared. 

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Yes, there has been consultation with the Data Protection Commissioner’s Office, and the Office is satisfied with the researcher access proposal subject to the implementation of the Data Protection Impact Assessments and the safeguards outlined therein.
 

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Individuals have not given their consent for the use of their data that is held within the COVID-19 Data Research Hub, 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. Visit the HRCDC website
 

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Researcher FAQs

Access to the CSO COVID-19 data hub 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 eligibility criteria and application process, and download an application form

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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 COVID-19 data flows, data sets and data variables, CSO safeguards and protocols, and project feasibility. Such advice will facilitate a more refined application. Please contact: Sanela Smith, CSO Statistician email: c19researchinfo@cso.ie

 

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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 COVID-19 health data. 

Read more about the eligibility criteria and application process, and download an application form
 

 

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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
 

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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 Central Statistics Office (CSO) that grants access to the COVID-19 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.

Read more about applying for access to the COVID-19 Data Research Hub

 

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The legal basis for processing of personal health data as contained in the COVID-19 Data Research Hub 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 typically Article 9(2)(i) and (j) of the General Data Protection Regulation (GDPR).  

Read about the legislation in full

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Health research is defined according to the Health Research Regulations 2018 (Regulation 3(2)(a))

“Health research” means any of the following scientific research for the purpose of human health: 
i.    research with the goal of understanding normal and abnormal functioning, at molecular, cellular, organ system and whole body levels; 
ii.    research that is specifically concerned with innovative strategies, devices, products or services for the diagnosis, treatment or prevention of human disease or injury; 
iii.    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; 
iv.    research with the goal of improving the efficiency and effectiveness of health professionals and the health care system; 
v.    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;

Health research referred to in clause (i) to (v) above may include action taken to establish whether an individual may be suitable for inclusion in the research.
 

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The data is pseudonymised. All direct identifiers such as names and addresses are removed by Central Statistics Office (CSO). Additionally, once in receipt of Health Service Executive (HSE) 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. 

Read more about how data is processed and stored for maximum privacy in the COVID-19 Data Research Hub

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In the context of the ongoing COVID-19 crisis, a wealth of data is being collected within the Irish healthcare system, including routinely collected hospital data, data on COVID-19 test referrals, data from the contact tracing system, survey data and other administrative data.

The main data flows to the COVID-19 Data Research Hub are:

•    HSE coronavirus assessments, test referrals and facilities data
•    Covid Cases in Hospitals for the Previous 24 Hours 
•    C19 Covid Care Tracker Application Data Source Tier 
•    HSE Computerised Infectious Disease Reporting System 
•    Hospital Inpatient Discharge Data 
•    National Office of Clinical Audit Intensive Care Unit Data
•    Situation, Background, Assessment, Recommendation, Shift Handover Dat

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The RGDB Secretariat can be contacted via email at COVIDdatahub@hrb.ie

The Central Statistics Office (CSO) has nominated a dedicated researcher liaison who can provide provisional advice to researchers on the available COVID-19 datasets and on the CSO safeguards and protocols in advance of submitting a Research Data Governance Board (RDGB) application. Please contact: Sanela Jojkic, CSO Statistician. Email: Sanela.Jojkic@cso.ie

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