Ireland: Difference between revisions
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Revision as of 19:30, 28 November 2023
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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 Dictionary: Compilation: Department of Health Databases (CSO).
Source of Information: Unknown.
Data level: National level.
Number of Records: Unknown.
Date Range: Varies.
Cancer Areas of Interest: Neoplasms (C00-D48), varies for each dataset.
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.
Contact information: 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: Data Dictionary: National Cancer Registry. 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.
Data access: Partially publicly available [4]. Instructions to request data for restricted content [5].
Contact information: 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 occured 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.
Data access: Partially publicly available [8]. Instructions to request data for restricted content [9]. Reports information [10].
Contact information: 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 onwards.
Cancer Areas of Interest: Unknown.
Data access: Not publicly available. Instructions to request data for restricted content [14].
Contact information: 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), a sample survey of the general population, 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: Person 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.
Data access: Partially publicly available [17] and [18]. Instructions to request data for restricted content [19].
Contact information: Information [20].
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 [21].
Available type of information: Survey reports for all the years.
Source of Information: Responses from survey questionnaire.
Data level: Respondent 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.
Data access: Partially publicly available [22]. Instructions to request data for restricted content [23].
Contact information: Information was not found.
Clinical Practices Guidelines
Compilation: National Cancer Control Programme Guidelines
Sponsor, manager or home institution: National Cancer Control Programme and Health Service Executive (HSE).
Primary purpose: To prevent cancer, treat cancer, and improve the survival and quality of life for those who develop cancer through research-based strategies and actions.
Type of information: Recommendations care, monitoring, diagnosis, staging, quality of life, and treatment of many types of cancer.
Access to information: List of guidelines [24].
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.
Data level: National level.
Access to information: Access information [25]. Quality of life research reports [26].
Report: EU Country Cancer Profile 2023
Sponsor, manager or home institution: OECD and European Commission.
Primary purpose: To provide reliable data on cancer prevention and care, identifying trends, disparities, and inequalities among EU Member States and regions to guide interventions under Europe's Beating Cancer Plan.
Type of information: National cancer burden; Cancer incidence and mortality; Risk factors for cancer; Early detection programs (screenings); Cancer care performance, The impact of COVID-19 on cancer care.
Data level: National level.
Access to information: Access Information [27].
Report: National Cancer Strategy 2017-2026
Sponsor, manager or home institution: Department of Health.
Primary purpose: To implement a comprehensive strategy designed to achieve specific performance indicators, including reducing smoking rates, enhancing cancer awareness, improving early diagnosis and treatment, and ensuring the delivery of high-quality care for cancer patients in Ireland.
Type of information: Report objectives; Performance indicator; Target and target date; Recommendations; Report implementation.
Data level: National level.
Access to information: Access Information [28].
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 [29].
Quality of Life and Palliative Care Research
List of Articles: Quality of Life [30] and Palliative Care [31].
