Ireland
Cancer Centers
Healthcare System
Ireland operates a complex healthcare system with both public and private providers and payers. The Health Service Executive (HSE) is the primary provider, delivering health and social care services both directly and through contracted professionals. While there is access to public healthcare for all residents, Ireland does not have universal primary care coverage, and the access to and charges for services depend on an individual's circumstances.
The population is divided into two categories. About 36% of the population holds medical cards, allocated primarily based on a low income, which grants them access to certain services without charge, including GP and hospital care, and lower costs for prescription medicines. Around 64% of the population does not have a medical card, although some of this group (about 10% of the total population) holds a GP visit card, granting free GP care. This includes all children under 6 and adults above 70, regardless of income.
Despite public access, the two-tier system means many public services have substantial waiting lists. To bypass these, around 46% of the population have private health insurance (PHI), providing preferential access to some services. It should be noted that there is a portion of the population (around 20%) that is not covered by either a medical card, a GP visit card, or PHI.
The HSE and other specialized agencies manage health data, including claims data and registries. Implementation of a unified electronic health record system has been an ongoing effort, with many hospitals and clinics maintaining individual systems. Privacy and security are ensured according to the General Data Protection Regulation (GDPR).
Administrative or Claims Data
Compilation: Department of Health Databases (CSO)
Sponsor, manager or home institution: Department of Health; Central Statistics Office.
Primary purpose: Databases provided by the Department of Health and made available through the Central Statistics Office website to disseminate data.
Type of Information: Data on discharge, diagnostics, and procedures for inpatients. Age-Standardised Data for Principal Procedure; Age-Standardised Morbidity Rate for Principal Procedures; In-Patient and Daycase Principal Procedures and Average Length of Hospital Stay; Hospital Discharges of In-Patients, Daycases and Length of Stay (All Procedures); Hospital Discharges of In-Patients, Daycases and Length of Stay (National Data); All Procedures; In-Patient and Daycase Procedures and Average Length of Hospital Stay; Age-Standardised Discharge Data for Principal Diagnosis; Age-Standardised Data for Principal Diagnosis; Age-Standardised Morbidity Rate for All Procedures; Age-Standardised Discharge Data for Principal Procedures; Age-Standardised Discharge Data for All Procedures; Age-Standardised Discharge Rate for All Procedures; Age-Standardised Morbidity Rate for All Procedures; Age-Standardised Hospital Discharge Data for Selected Principal Procedures; Age-Standardised Discharge Data for Selected Principal Procedures; Age-Standardised Morbidity Data for Selected Principal Procedures; Age Specific Data for Selected Procedures; In-Patient and Daycase with Principal Diagnosis and Average Length of Hospital Stay; In-Patient Hospital Discharge Data for Principal Diagnoses; Hospital Discharge Data for Principal Diagnoses; Hospital Discharge Rates for Principal Diagnoses; In-Patient Hospital Discharge Data for Principal Procedures; Hospital Discharge Data for Principal Procedures; Hospital Discharges of In-Patients, Daycases and Length of Stay (All Diagnoses); Age-Standardised Data for Selected Principal Procedures; Age-Standardised Data for Principal Procedures; Potential Years of Life Lost; Selected Principal Procedures; Age-Standardised Data for All Procedures. Filtered by year, age group, sex, type of procedure, principal and additional procedure, selected principal procedure, area, ISHMT, county, and HSE region, and cause of death.
Source of Information: Unknown.
Data level: National level.
Number of Records: Unknown.
Date Range: Varies.
Cancer Areas of Interest: Varies for each dataset. Neoplasms; Malignant neoplasm - colon, rectum, anus; Malignant neoplasms - trachea, bronchus, lung; Malignant neoplasm - skin; Malignant neoplasm - breast; Malignant neoplasm - uterus; Malignant neoplasm - ovary; Malignant neoplasm - prostate; Malignant neoplasm - bladder; Other malignant neoplasms; Carcinoma in situ; Benign neoplasm of colon, rectum, anus; Leiomyoma of the uterus; Other benign/uncertain neoplasms; Malignant neoplasm of lip, oral cavity, pharynx; Malignant neoplasm of the esophagus; Malignant neoplasm of the stomach; Malignant neoplasm of rectum and anus; Malignant neoplasm of liver and the intrahepatic bile ducts; Malignant neoplasm of the pancreas; Malignant neoplasm of larynx and trachea/bronchus/lung; Malignant neoplasm of cervix uteri; Malignant neoplasm of other parts of the uterus; Malignant neoplasm of the kidney; Malignant neoplasm of lymph/haematopoietic tissue; All other malignant neoplasms; Cancer of trachea, bronchus, and lung; Malignant neoplasm of the larynx; Cancer.
Open data access: Publicly available. Access the databases [1] through the filtering tool. Go to the "Other Public Sector Bodies" tab in "Browse" to enter the Department of Health's folder. In that folder, you will find several databases of health statistics with lists of cancer areas of interest.
Information/Contact for data request: Contact information [2].
Registries
Database: National Cancer Registry
Sponsor, manager or home institution: National Cancer Registry of Ireland.
Primary purpose: Collect and disseminate cancer incidence statistics.
Type of Information: Address 1; Address 2; Address 3; Address 4; Address 5; Address Id; Admission Type; Age At Incidence; Also Known As; Approximate Treatment Date; Care of Address; Clinical M; Clinical N; Clinical T; Clinical Tumour Size; Closed Date; Comment Date; Comment Id; Consultant; County Id; Date of Birth; Date of Death; Date of Incidence; Date of Metastasis; Date of Notification; Date of Recurrence; Date of Treatment; Date of Tumour Marker; Do Not Contact; Firstname; Firstname 2; Grade; Histology Lab Number; Hospital of Source of Notification; Hospital of Treatment; House Name; House Number; ICD-10-O-3; Incidence Report Ready; Maiden Name; Main Address; Management Id; Marker Id; Marker Type; Marker Value; Medical Oncology Code; Medical Oncology Comment; Medical Records Number; Metastasis Id; Metastasis Topography; Method Of Diagnosis; Method Of Presentation; Morphology Code ICD-O3; Morphology Code ICD-O3 Group; Morphology Description Id; Mortality Status; Neo Adjuvant; Node Evaluation; Nodes Positive; Nodes Sampled; Notes; Pathological M; Pathological N; Pathological T; Pathological Tumour Size; Pathology Lab Id; Pathology Subtext; Patient Cervical Check Report Status; Patient Date of Cervical Check Report; Patient Id; Postcode; PPS Number; Procedure Category; Procedure Group; Purpose of Treatment; Sex; Side; Source Id; Source Of Notification Id; Staging Site Topography; Surname; Treatment Coding System; Treatment Id; Treatment Site Topography; Tumour Cervical Check Report Status; Tumour Date of Cervical Check Report; Tumour Death Certificate Only; Tumour Id; Tumour Status; Tumour Survival; Tumour Topography. Data dictionary information [3].
Available type of information: Cancer incidence and survival by year, age, stage, type of cancer, sex, county, region and childhood cancer.
Source of Information: Data is collected from hospital medical records by nurses acting as hospital liaisons. Death information is collected using death certificates.
Data level: Patient level.
Available data level: Regional and national level.
Number of Records: Unknown.
Date Range: 1994 onwards.
Cancer Areas of Interest: Cancer Areas of Interest: National Cancer Registry.
Open data access: Partially publicly available [4]. Instructions to request data for restricted content [5].
Information/Contact for data request: Contact information [6].
Database: Vital Statistics
Sponsor, manager or home institution: Central Statistics Office (CSO).
Primary purpose: Provide information about Marriages Registration, Death Registration, Stillbirths Registration, Live Births Registration and Mortality Differentials in Ireland.
Type of information: Age of bride and groom, Previous marital status of bride and groom, Area of residence of bride and groom before and after marriage, Occupation of bride and groom, Place of marriage and Type of marriage ceremony, Date of death, Address of residence of deceased, Place of death, Cause of death, Occupation of deceased, Age of deceased, Sex of deceased, Marital Status of deceased and Birth weight, Gestational Age, Date of birth of the infant, Date of birth of parents, Marital status of the mother, Number of previous children, County of residence of mother, Multiplicity, Occupation of parents, Baby's forename.
Available type of information: Births by age of mother and sex of the child, area of residence, region, within and outside of marriage/civil partnership, the average age of mother, within and outside of marriage/civil partnership, the birth rate per 1,000 Population, date and month of occurrence, previous born children, period of gestation, birthweight, place of occurrence, nationality of mother, nationality of both parents, total number of hospital births, fertility rates, occupation of the mother. Deaths occur by area of residence, sex and age group, cause of death, sex and age group. Suicides by area of residence and sex. Published Suicide Deaths and Late Registered Deaths. Live Births and Stillbirths and Infant Mortality.
Source of Information: Methodology for each section of the Vital Statistics database [7].
Data level: Patient level.
Available data level: Regional, national level.
Number of Records: Unknown.
Date Range: Varies for each section and variable.
Cancer Areas of Interest: Cancer Areas of Interest: Vital Statistics.
Open data access: Partially publicly available [8]. Instructions to request data for restricted content [9]. Reports information [10].
Information/Contact for data request: Contact information [11].
Database: National Oncology Drugs Management System
Sponsor, manager or home institution: National Cancer Control Programme (NCCP); Health Service Executive; National Cancer Drug Management Programme; Primary Care Reimbursement Service (PCRS).
Primary purpose: To organize and oversee the utilization of cancer medications nationally.
Type of information: Patient demographics, usage of cancer drugs, and expenditures on cancer medications; Other patients' information comprises their name, date of birth, gender, address, and contact details (if provided), as well as their PPS or medical card number or long-term illness card number (if available). Information about the data contained in the database [13].
Source of Information: The hospital personnel enters the necessary data into an internet-based system supervised and run by PCRS. PCRS provides NCCP with anonymous and combined reports generated from the system. The data is gathered every month.
Data level: Patient level.
Number of Records: 21,030 claims submitted – 2021; 17,019 claims submitted – 2020; 15,640 claims submitted - 2019.
Date Range: Data collection started in September 2012, and reporting procedure began in April 2013.
Cancer Areas of Interest: Unknown.
Open data access: Not publicly available. Instructions to request data for restricted content [14].
Information/Contact for data request: Contact information [15].
Databases for Clinical Trials, Surveys and Biobanks
Survey: Irish Health Survey 2019
Sponsor, manager or home institution: Central Statistics Office.
Primary purpose: Is the Irish version of the European Health Interview Survey (EHIS), and the goal is to obtain reliable information about health care status and usage in order to create more effective policies.
Type of information: Health behavior and health care usage information, including smoking behavior; filtered by economic situation, gender, age, region, and disability status. Survey questions access [16].
Source of Information: Responses to the survey questions conducted all over Ireland.
Data level: Patient level.
Available data level: Regional, national level.
Number of Records: 7,621 respondents.
Date Range: 2019. The survey was also conducted in 2015.
Cancer Areas of Interest: All cancer areas related to smoking.
Open data access: Partially publicly available [17]. Instructions to request data for restricted content [18].
Information/Contact for data request: Contact information [19].
Survey: Healthy Ireland Survey
Sponsor, manager or home institution: Department of Health, Statistics, and Analytics Unit.
Primary purpose: Obtain information about the health status and behavior of the Irish population.
Type of information: Survey responses about topics including general health, smoking, alcohol, weight management, health service utilization, dental and oral health, skin protection, menstrual health and period poverty, suicide awareness, the impact of COVID-19 on health behaviors. The survey questionnaire used for the 2022 survey information [20].
Available type of information: Survey reports for all the years.
Source of Information: Responses from survey questionnaire.
Data level: Patient level.
Available data level: National level.
Number of Records: Around 7,500 respondents.
Date Range: 2014-2022.
Cancer Areas of Interest: All cancer areas related to smoking.
Open data access: Partially publicly available [21]. Instructions to request data for restricted content [22].
Information/Contact for data request: Contact information was not found.
Latest Policymaking Initiatives
Compilation: Cancer Statistics Reports
Sponsor, manager or home institution: National Cancer Registry of Ireland.
Primary purpose: Provide reports about cancer data collected by the institute.
Type of information: Annual financial reports, strategic plans, cancer trends & projections, statistical reports, cancer atlases, research publications, all Ireland cancer statistics, infographics.
Level: National level.
Access to information: Access information [23].
Compilation: ESMO Patient Guides
Sponsor, manager or home institution: European Society for Medical Oncology
Primary purpose: To translate complex medical language into understandable information for patients.
Available guides: Bone Health in Cancer; Cancer Care During the COVID-19 Pandemic; Cancer Pain Management; Immunotherapy Side Effects; Personalized Cancer Medicine; Survivorship; AML; Biliary Tract Cancer; Bladder Cancer; Bone Sarcoma; Breast Cancer; Cervical Cancer; CML; Colorectal Cancer; Endometrial Cancer; Follicular Lymphoma; Glioma; Head and Neck Cancer; Hepatocellular Carcinoma; Multiple Myeloma; Non-Small-Cell Lung Cancer; Oesophageal Cancer; Ovarian Cancer; Pancreatic Cancer; Prostate Cancer; Soft Tissue Sarcoma; Stomach Cancer; Testicular Cancer.
Type of information: Information on each guide varies for each cancer type. Generally, guides provide definitions, explanations of causes, diagnosis, treatment, treatment options, care after treatment, among others.
Access to information: List of guides [24].
