Portugal: Difference between revisions
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Revision as of 19:13, 13 June 2023
Cancer Centers
Healthcare System
Portugal provides universal healthcare to all its residents, including the unemployed and illegal immigrants. There are also health insurance schemes that provide coverage for specific sectors, both public and private. Citizens can also opt for private health insurance schemes. The system providing healthcare in Portugal is called Serviço Nacional de Saúde (SNS), managed by the Ministry of Health, and is mainly funded through general taxation, but a third of its funding comes from the private sector such as out-of-pocket payments via co-funding or direct payment by the patient.
Primary care in Portugal is delivered through a combination of public and private healthcare providers, with the National Health Service (NHS) primarily offering primary and acute general and specialized hospital care. While dental consultations, diagnostic services, renal dialysis, and rehabilitation services are mostly offered by private healthcare providers, these services are often funded by the government under contractual agreements with the NHS. Secondary and tertiary care is mainly provided in hospitals organized into Hospital Centres based on geographical location.
Portugal's main statistical authority is the Instituto Nacional de Estatística (INE), responsible for the production and dissemination of official statistics that ensure the supervision and the technical and scientific coordination of the National Statistical System.
Administrative or Claims Data
Database: Diagnosis Related Groups (GDH)
Primary purpose: Collect and make available information regarding the use of resources related to inpatient care.
Sponsor, manager or home institution: Serviço Nacional de Saúde (SNS) and Administração Central do Sistema de saúde (ACSS).
Type of information: Data dictionary - GDH Portugal.
Available type of information: Number of outpatients, equivalent patients, and average delay considering the following variables: Hospitalization, Surgical hospitalization, Medical ICU, Outpatient, Surgical Outpatient, % Outpatient Surgical/Total Scheduled Surgical, and Medical Outpatient.
Source of information: Portugal's hospitals.
Data level: Patient level.
Available data level: Hospital level.
Number of Records: Unknown.
Date range: 1993 onwards (restricted access); 2011-2014 (open access).
Cancer Areas of Interest: Lymphatic malignancies and/or other malignancies and/or neoplasms of uncertain behavior; Major procedures in BO for lymph nodes/hematopoietic organs or other; Malignant diseases of the ear, nose, mouth, throat, head/face; Malignant diseases of the kidney and/or urinary tract; Procedures in the kidney and/or urinary tract, due to malignant diseases; Malignant diseases of the male reproductive system; Malignant diseases of the female reproductive system; Musculoskeletal malignancies and/or pathological fractures due to musculoskeletal malignancies; Malignant breast disorders; In utero and/or adnexal procedures for non-ovarian and/or non-adnexal malignancy; In utero and/or adnexal procedures for ovarian and/or adnexal malignancy; Procedures in the uterus and/or adnexa for non-malignant disease other than uterine fibroids; Malignant diseases of the digestive system; Respiratory malignancies; Malignant diseases of the hepatobiliary system and/or pancreas; Malignant diseases of the nervous system; Lymphoma, myeloma and non-acute leukemia; Other procedures in BO for lymphatic neoplasms/hematopoietic organs or other.
Data access: Partially publicly available [2] in the documents "National Production by GDH" and "National production by hospital". The document that comprises the periods of 2014 and 2015 does not follow this nomenclature rule and is entitled "2014 GDH APR31". Instructions to request data for restricted content [3].
Information/contact for data request: Contact information [4].
Registries
Database: Mortality by Malignant Neoplasms
Primary purpose: Provide information regarding the national mortality and its social and demographic distribution.
Sponsor, manager or home institution: Instituto Nacional de Estatística (INE).
Type of information: Data dictionary - Mortality by malignant neoplasms Portugal.
Available type of information: Number of deaths; Data reference period; Year; Region of residence; Sex; Age group; Death cause; Type of cancer; Potential years of life lost; Rate of potential years of life lost (per 100 000 inhabitants); Mortality rate (per 100 000 inhabitants or in percentage); Standardized mortality rate (per 100 000 inhabitants).
Source of information: Data collection through the notary offices and registered in the Integrated System for Civil Registration and Identification (SIRIC).
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date range: Regional level (2002 onwards) and Patient level (1998 onwards).
Cancer Areas of Interest: Cancer areas of interest - Mortality by malignant neoplasms Portugal.
Open data access: Partially publicly available [8]. Instructions to request data for restricted content [9].
Information/contact for data request: Contact information [10].
Database: Health Care Personnel Statistics
Primary purpose: Publish statistics on the number of health professionals registered in professional organizations.
Sponsor, manager or home institution: Instituto Nacional de Estatística (INE).
Type of information: Number of medical specialists filtered by place of residence, gender and specialty, subspecialty or competence. Considering the cancer area, the database presents information about the number of medical and pediatric oncology professionals.
Source of information: Regarding the information about oncologists, the source is the Medical Association.
Data level: Regional level.
Number of Records: Unknown.
Date range: 2011 onwards.
Cancer Areas of Interest: Unknown.
Data access: Publicly available [13].
Information/contact for data request: Contact information [14].
Database: Cancer Screening Monitoring
Primary purpose: Promote the early diagnosis of cancer in order to start treatment early and thus decrease the national cancer mortality rate.
Sponsor, manager or home institution: Direção Geral da Saúde (DGS).
Type of information: Information regarding breast, cervical, colon, and rectal cancer screening. Examples of available data are the screening adherence rate, test positivity rate, geographic coverage rate, coverage rate by region, and number of eligible populations.
Source of information: Forms filled out by the regional Health Administrations and the Autonomous Regions of Portugal.
Data level: Regional level.
Number of Records: Unknown.
Date range: The project occurs since 1990. Regional-level data is available from 2014 onwards.
Cancer Areas of Interest: Breast, cervical, colon, and rectal cancer.
Data access: Publicly available [16]. Monitoring reports are available at the General Health Directorate (DGS) [17]. The 2015 report information [18].
Information/contact for data request: Contact information [19].
Database: Cancer Incidence, Survival and Mortality in the Southern Region of Portugal (ISM)
Primary purpose: Inform about cancer statistics regarding the south region of Portugal. Gathers information about the following regions: health regions of Lisboa e Vale do Tejo (LVT), Alentejo, Algarve and the Autonomous Region of Madeira.
Sponsor, manager or home institution: National Cancer Registry (RON) and Regional Oncology Registry South (ROR-Sul).
Type of information: Survival; Age; Year; Gender; Incidence rates; Tumor location; Mortality rates; Patient name; Date of birth; Address; Diagnosis; Tumor; Treatment fields; Diagnosis dates; Basis of diagnosis; Primary location; Histologic type; Behavior; Stage; Treatment start date; Treatment sequence; Patient vital status; Date of death and cause of death.
Source of information: Data from public and private health institutions of the region.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date range: Regional level is presented from 2002 to 2017, and 1998 - 2000/2001. The patient level date range is unknown.
Cancer Areas of Interest: The list can be checked on page 25 of the document [21].
Data access: Partially publicly available. Reports with regional data can be accessed through the national miscellaneous publications section on the National Cancer Registry website [22]. Instructions to request data for restricted content [23].
Information/contact for data request: Contact information [24].
Database: Cancer Survival and Incidence in the Northern Region of Portugal
Primary purpose: Inform about cancer statistics regarding the south region of Portugal. Gathers information about the following districts: Braga, Bragança, Porto, Viana do Castelo and Vila Real.
Sponsor, manager or home institution: National Cancer Registry (RON) and Northern Regional Oncology Registry (RORENO).
Type of information: Cancer survival; Gender; Type of tumor; Time since diagnosis; Age; Year; Region; Cancer incidence; Tumor location. Patient name; Date of birth; Address; Diagnosis; Tumor; Treatment fields; Diagnosis dates; Basis of diagnosis; Primary location; Histologic type; Behavior; Stage; Treatment start date; Treatment sequence; Patient vital status; Date of death and cause of death.
Source of information: Data from public and private health institutions of the region.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date range: Incidence is presented from 1988 to 2011. Survival ranges from 2005 to 2010.
Cancer Areas of Interest: Survival - all tumors except basal cellular and squamous cell tumors of the skin. Incidence - all tumors except basal cell carcinomas and nonspecific tumors of the skin.
Data access: Partially publicly available. Reports with regional data can be accessed through the national miscellaneous publications section on the National Cancer Registry website [27]. Instructions to request data for restricted content [28].
Information/contact for data request: Contact information [29].
Database: Cancer Survival and Incidence in the Central Region of Portugal
Primary purpose: Inform about cancer statistics regarding the south region of Portugal. Gathers information about the following districts: Aveiro, Castelo Branco, Coimbra, Guarda, Leiria e Viseu.
Sponsor, manager or home institution: National Cancer Registry (RON) and Central zone regional oncology registry (ROR-Centro).
Type of information: Cancer incidence; Sex, Age; Year; Tumor location; Patient name; Date of birth; Address; Diagnosis; Tumor; Treatment fields; Diagnosis dates; Basis of diagnosis; Primary location; Histologic type; Behavior; Stage; Treatment start date; Treatment sequence; Patient vital status; Date of death and cause of death.
Source of information: Data from public and private health institutions of the region.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date range: 1989 - 2010.
Cancer Areas of Interest: List is available on page 3 of the document [31].
Data access: Partially publicly available. Reports with regional data can be accessed through the national miscellaneous publications section on the National Cancer Registry website [32]. Instructions to request data for restricted content [33].
Information/contact for data request: Contact information [34].
Database: Cancer Incidence in Portugal
Primary purpose: Inform about cancer statistics regarding all regions of Portugal.
Sponsor, manager or home institution: National Cancer Registry (RON).
Type of information: Number of new cancer cases; Age; Sex; Tumor site; Place of residence; Cancer incidence rates per 100,000 persons; Mortality; Tumor type; Patient name; Date of birth; Address; Diagnosis; Tumor; Treatment fields; Diagnosis dates; Basis of diagnosis; Primary location; Histologic type; Behavior; Stage; Treatment start date; Treatment sequence; Patient vital status; Date of death and cause of death.
Source of information: Data from public and private health institutions in Portugal.
Data level: Patient level.
Available data level: Regional level.
Number of Records: Unknown.
Date range: 2001 - 2019.
Cancer Areas of Interest: Oral cavity and pharynx; Peritoneum and digestive organs; Respiratory system and intrathoracic organs; Hematopoietic system and endothelial reticulum; Genito-urinary organs; Breast; Eye and lacrimal gland; Nervous system; Endocrine glands; Soft tissue; Lymph nodes; bones and joints; Primary of unknown origin; Skin melanoma; Other tumors.
Data access: Reports with regional data can be accessed through the RON publications section on the National Cancer Registry website [36]. Instructions to request data for restricted content [37].
Information/contact for data request: Contact information [38].
Databases for Clinical Trials, Surveys and Biobanks
Survey: National Health Interview Survey (INS)
Primary purpose: Publish statistics on health status, health care and health determinants, and socio-demographic characteristics of the population to enable the study and improvement of these areas.
Sponsor, manager or home institution: Instituto Nacional de Estatística (INE).
Available type of information: Regarding cancer prevention information, contains the percentage of the female resident population aged 50 to 69 years who reported having had mammography done in the 2 years prior to the interview and the female resident population aged 20 to 69 years who reported having had cervical cytology done in the 3 years prior to the interview, both filtered by education level and region of residence.
Type of information: Type of information - INS Portugal.
Source of information: Instituto Nacional de Estatística (INE).
Data level: Patient level.
Available data level: National level.
Number of Records: Unknown.
Date range: 2005 onwards. It occurs on a five-year basis.
Cancer Areas of Interest: Breast and cervix neoplasms.
Data access: Partially publicly available. Mammography examination information [40], [41], [42]; Cervical cytology information [43], [44], [45]. Instructions to request data for restricted content [46].
Information/contact for data request: Contact information [47].
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: Colorectal 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 [12].
