Associate Professor Tomas Barry is leading national research that aims to better understand and improve cardiac arrest survival.
Linking and harnessing health and population data to improve outcomes in Out-of-Hospital Cardiac Arrest
Study Information & Privacy Notice
This research aims to improve the understanding of a serious and often fatal condition called Out-of-Hospital Cardiac Arrest (OHCA). It also aims to use this understanding to design better treatment approaches.
Dr Tomás Barry is conducting this research. Dr Barry is an Associate Professor at University College Dublin.
More information about Dr Barry is available here: (opens in a new window)https://people.ucd.ie/tomas.barry.
Dr Barry can be contacted at (opens in a new window)tomas.barry@ucd.ie.
University College Dublin (UCD) is the Data Controller for this research.
The UCD Data Protection Officer can be contacted via the information below:
Office of the DPORoebuck Castle
University College Dublin
Belfield, Dublin 4, Ireland
Email: (opens in a new window)gdpr@ucd.ie
Website: http://www.ucd.ie/gdpr/
To contact the office to raise a data protection concern, please email the UCD DPO at (opens in a new window)gdpr@ucd.ie.
The Health Service Executive (HSE) is the data controller for the Out-of-Hospital Cardiac Arrest Registry (OHCAR) data and Hospital Inpatient Enquiry (HIPE) data that will be shared with UCD to facilitate this research project.
The HSE data protection officer (DPO) can be contacted directly by email at (opens in a new window)dpo@hse.ie.
Or via HSE Data Protection Officer, HSE National Data Protection Office, Dr Steevens' Hospital, Steeven's Lane, Dublin 8 D08 W2A8
The Health Research Board is funding this research: (opens in a new window)https://www.hrb.ie/
OHCA is an emergency where a person’s heart suddenly stops pumping blood around the body. It happens without warning, often because of an abnormal heart rhythm. In Ireland around 3,000 people suffer this condition every year.
Survival is possible when key treatments are available very quickly after OHCA occurs. The treatments that make the most difference are CPR (cardio-pulmonary resuscitation) and early defibrillation (providing an electrical ‘shock’ to the heart) with an AED (automatic external defibrillator).
Currently, the survival following OHCA in Ireland is low at around 7%. Community and health system-based initiatives are trying to improve this. Although we know many of the treatments that work best in ‘OHCA’ designing a health system that gets these treatments to the right person, at the right time and provides appropriate follow-on care is a challenge.
Ireland routinely collects high-quality information about OHCA via an organisation called the Out-of-Hospital Cardiac Arrest Registry (OHCAR). OHCAR is the national registry of OHCA, for which the HSE is the data controller. This research will for the first time link data from OHCAR with other important data about the Irish population (from the Central Statistics Office Census) and with data about hospital care for OHCA patients from the Hospital In-Patient Enquiry (HIPE).
All data will be stored and processed in a secure fashion and will be pseudo-anonymised to protect patients’ identities.
The research will specifically look at groups of patients considered most likely to survive and then use computer programs to explore how a range of different patient, community, and health system factors interact to influence whether survival occurred. Ultimately this information will be used to design and then test better health systems that increase the amount of people that survive OHCA in Ireland.
This research project will combine information from three different sources:
OHCAR data
OHCAR data will include data on patients who suffered a witnessed or ‘shockable’ out-of-hospital cardiac arrest between 2014 – 2022 inclusive. The data will include details of the care provided by emergency medical services (ambulance services) and whether the patient survived to hospital discharge. This data will include the time, day of the week, month, and year that the OHCA happened as well as the patient's age and CSO Small Area location where the OHCA occurred. Patient name, address, or date of birth will not be known to the research team.
HIPE data
HIPE data will add hospital care data for those patients who were admitted to hospital following OHCA. The HIPE data will include details of other medical conditions these patients suffered from. Once again, patient name, address or date of birth will not be known to the research team.
CSO census data
CSO Small Area data comes from the population census. It is anonymous data and is publicly available.
CSO Small Areas are areas of population generally comprising between 80 and 120 dwellings created by The National Institute of Regional and Spatial Analysis (NIRSA) on behalf of the Ordnance Survey Ireland (OSi) in consultation with CSO. Small Areas were designed as the lowest level of geography for the compilation of statistics in line with data protection and generally comprise either complete or part of townlands or neighbourhoods.
Small Area data provides information about a small area where OHCA has occurred and covers the following 16 themes; Theme 1: Sex, age and marital status, Theme 2: Migration, ethnicity, religion and foreign languages, Theme 3: Irish language, Theme 4: Families, Theme 5: Private households, Theme 6: Housing, Theme 7: Communal establishments, Theme 8: Principal status, Theme 9: Social class and socio-economic group, Theme 10: Education, Theme 11: Commuting, Theme 12: Disability, carers and general health, Theme 13: Occupations, Theme 14: Industries
The data will be stored on a secure UCD server. The data will not be transferred outside UCD. The data will be stored in an encrypted format. The data will be stored for ten years and then deleted.
At the later stages of the research project, the project will explore whether some or all of the data can be transformed to a completely and irreversibly anonymous dataset that could be made available to other researchers for further research.
The research analysis will use modern computer programs to explore how a range of different patient, community, and health systems factors interact to influence whether patients survive from OHCA. Ultimately the aim is to use this information to design and then test better health systems that increase the amount of people that survive OHCA in Ireland.
Research findings will be published in scientific journals. The research data concerning individuals will be confidential and will not be shared at individual level. Only data that is fully anonymous will be included in publications.
The primary risk is that of a loss of confidentiality should the research data become available to a third party.
Although patient name, address or date of birth will not be included in the research data, the nature of the research data is that it will include some details of the care provided to individual patients. This means that an individual patient could potentially be identifiable if a third party already had significant knowledge of that individual’s OHCA episode.
The data processed during this research will be stored in a secure area and will be encrypted to protect the confidentiality of the individuals whose data is included.
Patients’ identities will not be known to the researcher and individual consent cannot be sought. A conditional consent declaration has been obtained for the (opens in a new window)Health Research Consent Declaration Committee (HRCDC) recognising that obtaining individual consent will not be possible for this research and that the public interest in doing the research significantly outweighs the need for explicit consent.
Please contact Dr Barry ((opens in a new window)tomas.barry@ucd.ie). Dr Barry cannot identify your data within the research dataset however he will assist you in liaising with OHCAR (i.e. the HSE). OHCAR holds the personal identifiers of all patients in their dataset. If relevant OHCAR can advise Dr Barry of the unique research study ID number that identifies your data in the research dataset. Thereafter your data will be removed from the research project dataset.
GDPR requires that a lawful ground for the processing of personal data in Article 6 must be identified; In this case the Art 6 ground is that the processing is ‘Necessary for the performance of a task carried out in the public interest’. In addition, the processing of Article 9 type data (including health data) requires that a condition in Article 9 must be found; In this case the Art 9 ground is that the processing is 'Necessary for scientific research' (Article 9(2)(j)).