Spain

Healthcare System

Spain's healthcare system is the Sistema Nacional de Salud (SNS), a universal health system that covers 99% of the Spanish population and is funded by general taxation. The administration is divided at the national and regional level, with the national level managed by the Ministry of Health, Consumer Affairs and Social Welfare, whereas the 17 regional health departments manage the regional level. Both collaborate through the SNS Interterritorial Council in order to implement policy at the regional and national level.

The General Secretariat of Digital Health, Information and Innovation of the SNS is the body responsible for implementing the Digital Health Strategy of the SNS, which aims to improve the health of every Spanish citizen through the increased adoption of digital health solutions for healthcare and the development of infrastructures that allow providers to use data to help their patients.

The Instituto de Salud Carlos III (ISCIII) is a public research agency integrated with the Ministry of Science and Innovation and the Ministry of Health, and is responsible for conducting health research that aims to improve the health of the people, offer scientific and technical advice for policymaking, as well as develop educational programs for the entire SNS system.

The Spanish Network of Cancer Registries (REDECAN) was created in 2010 to assure the quality of information related to the incidence, survival, and prevalence of cancer in Spain and improve collection and analysis of this data, originally collected by the individual communities' cancer registries of Spain. It monitors plenty variables including cancer trends, geographic distribution, impact of cancer prevention and treatments.

Other major institutions related to healthcare and health research include the National Institute of Statistics and the National Drug Agency.

Administrative or Claims Data

Database: The Registry of Specialized Health Care Activity (RAE-CMBD)

[1] [2] [3]

Sponsor, manager or home institution: Ministerio de Sanidad.

Type of information: Presents administrative and clinical information on patients treated in the different Specialized Care and outpatient care modalities in the public or private sector. Includes hospitalization, home hospitalization care modalities, medical day hospital, outpatient surgery, outpatient procedures of special complexity and emergencies. General information about the hospitalization; morbidity data (main and secondary diagnosis registered using CIE9MC and CIE10ES, and age-adjusted hospitalization rates); procedures performed (registered using CCS).

Available type of information: Year; Age; Sex, Region of residence, Hospital region, Type of patient admission, Type of patient discharge, Financing system, Performed service at discharge in hospitalization, Group of hospitals, Type of hospital (public or private), Size of the hospital by number of beds [4].

Source of information: Reports from the providers that are sent to the Ministry of health.

Data level: Patient level.

Available data level: Regional level.

Date range: Varies accordingly to the category of care. Hospitalization (1997 onwards), acute care (1997 onwards), ambulatory care (2004 onwards). Information regarding the private sector are available from 2005 onwards.

Data access: Partially publicly available [5], [6]. Instructions to request data for restricted content [7].

Information/contact for data request: Contact information [8].

Registries

Database: Main indicators of The National Health System (INCLASNS)

[9] [10]

Primary purpose: Facilitates access to information that is already individually presented by official statistical institutions. The database does so by reuniting important indicators to research healthcare functioning and general health quality.

Sponsor, manager or home institution: Ministerio de Sanidad.

Type of information: Cancer mortality tax (premature and non-premature adjusted by age, per 100 000 hab.) and pertinence of conservative surgery in breast cancer in percentage [11].

Source of information: El Sistema de Información del Sistema Nacional de Salud and other sources (Instituto Nacional de Estadística, Centro Nacional de Epidemiología, Agencia Española de Medicamentos y Productos Sanitarios, etc.)

Data level: Regional level.

Number of Records: Includes 247 indicators.

Date range: 1990 onwards.

Cancer Areas of Interest: Unknown.

Data access: Publicly available [12].

Information/contact for data request: Contact information [13].

Database: Spanish Registry of Pediatric Tumors (RETI-SEHOP)

[14]

Primary purpose: Collects data and produces epidemiology research about childhood cancer.

Sponsor, manager or home institution: Sociedad Española de Hematología y Oncología Pediátricas (SEHOP) and Universitat de València (UV).

Type of information: Survival (3 and 5 years after diagnosis); Incidence; Medical treatment coverage in percentage; Cancer causes; Region; Sex; Year.

Source of information: Reports from all Spanish pediatric oncologic and hematologic hospital unities [15].

Data level: Regional level.

Number of Records: Covers more than 90% of national children cases. Between 1980-2021 there were 31.275 incidence cases registered.

Date range: Varies accordingly to selected indicators: survival (1980-2004), incidence (1983-2002), medical treatment coverage (1980-2012).

Cancer Areas of Interest: The list can be checked on pages XXXII - XXXV of this document [16].

Data access: Publicly available [17].

Information/contact for data request: Contact information [18].

Database: Annual Report of the National Health System

[19]

Primary purpose: Provides information about the health of the Spanish population and details about the operation and results of the National Health System (SNS).

Sponsor, manager or home institution: Ministerio de Sanidad.

Type of information: Population information, health status (well-being, morbidity, mortality), social determinants of health (socioeconomic determinant factors, lifestyles), and sanitary system (health care, accessibility, experience, patient, physical resources, human resources, and expenses). Some of the information in the reports is related to cancer diagnosis. The 2020-2021 report also includes information on the response of health services to COVID-19 (capacity of care, care activity related to COVID-19, impact on accessibility to the health system, impact on ordinary care activity, experience of the population, covid vaccination, diagnostic capacity, and pharmaceutical service).

Source of information: Data collected from the Councils of Health of the autonomous communities, the National Institute of Health Management and Surveys.

Data level: Regional level.

Number of Records: Unknown.

Date range: 2003 onwards.

Cancer Areas of Interest: Unknown.

Data access: Publicly available [20].

Information/contact for data request: Contact information [21].

Database: Mortality by cause of death]

[22] [23]

Primary purpose: Provides death statistics to enable monitoring and health measures to be taken.

Sponsor, manager or home institution: Ministerio de Sanidad.

Type of information: Crude mortality rates; Age-adjusted mortality rates; Age-adjusted premature mortality rates; Sex, Cause of death (including cancer diagnosis); Year, and geographic region.

Source of information: Mortality register by cause of death, made by the National Statistics Institute (INE) form the Medical Certificate of Death/Death Statistical Bulletin (CMD/BED) and the Birth Statistical Bulletin (BEP).

Data level: Patient level.

Available data level Regional level.

Number of Records: Unknown.

Date range: 1981 onwards.

Cancer Areas of Interest: (C00-D48): Tumors; (C00-C14): Malignant tumors of lip, oral cavity and pharynx; (C15-C26): Malignant tumors of digestive organs; (C30-C39): Malignant tumors of respiratory and intrathoracic organs; (C40-C41): Malignant tumors of bone and articular cartilage; (C43-C44): Melanoma and other malignant tumors of the skin; (C45-C49): Malignant tumors of mesothelial tissues and soft tissues; (C50): Malignant tumors of breast; (C51-C58): Malignant tumors of female genital organs; (C60-C63): Malignant tumors of male genital organs; (C64-C68): Malignant tumors of urinary tract; (C69-C72): Malignant tumors of eye, brain and other parts of the central nervous system; (C73-C75): Malignant tumors of thyroid and other endocrine glands; (C76-C80): Malignant tumors of ill-defined, secondary and unspecified sites; (C81-C96): Primary malignant tumors of lymphatic tissue, hematopoietic organs, and related tissues; (C97): Primary malignant tumors of multiple independent sites; (D00-D09): Neoplasms in situ; (D10-D36): Benign tumors; (D37-D48): Tumors of uncertain or unknown behavior.

Data access: Partially publicly available [24]. Instructions to request data for restricted content [25].

Information/contact for data request: Contact information [26].

Database: Late Fetal and Infant Mortality

[27]

Primary purpose: Contains statistical information about national children's death.

Sponsor, manager or home institution: Ministerio de Sanidad.

Type of information: Number of late fetal mortality and infant mortality; Age; Sex; Geographic region; Year and basic cause of death (including cancer diagnosis). It is possible to analyze the rates of late fetal mortality, infant mortality and perinatal mortality.

Source of information: The Birth Statistical Bulletin and in the Medical Certificate of Death/Death Statistical Bulletin.

Data level: Regional level.

Number of Records: Unknown.

Date range: 1981 onwards.

Cancer Areas of Interest: Neoplasms (C00-D48).

Data access: Publicly available [28].

Information/contact for data request: Contact information [29].

Database: The Specialized Care Information System (SIAE)

[30] [31]

Primary purpose: Provide statistical information about affiliation, dependency and purpose of care, staffing, human resources, activity and economic information of both public and private hospitals nationwide.

Sponsor, manager or home institution: Ministerio de Sanidad.

Type of information: Radiotherapeutic exams; Interventional radiology exams; Biopsies; Mammograms; Year, Type of hospital (public or private); Assistance purpose; Legal form, and geographic region.

Source of information: Unknown.

Data level: Regional level and Patient level.

Number of Records: Unknown.

Date range: 1997 onwards.

Cancer Areas of Interest: Unknown.

Data access: Publicly avaiable. Regional data information [32]. Patient data information [33].

Information/contact for data request: Contact information [34].

Database: Primary Care Clinical Data Base (BDCAP)

[35] [36]

Primary purpose: Make statistics on primary level care available.

Sponsor, manager or home institution: Ministerio de Sanidad.

Type of information: Active health problems in the year of study; Interconsultations; Visits; Procedures; Prescribed medications; Clinic parameters; Comorbidity; Year; Sex; Age; Birth country; Geographic region; Region's extent by the number of inhabitants; Annual income of patients; The employment situation of the patients; Subpopulation by type of health problem; Year of disease initiation; Subpopulation by prescribed medication.

Source of information: Electronic medical records.

Data level: Patient level.

Available ata level: Regional level.

Number of Records: Around 4,900,00 people per year.

Date range: 2011 onwards.

Cancer Areas of Interest: Cancer areas of interest list [37].

Data access: Publicly available [38]. Monographic and didactic reports information [39]. Instructions to request data for restricted content [40], [41].

Information/contact for data request: Contact information [42].

Database: Hospital Morbidity Survey (EMH)

[43]

Primary purpose: To determine the geographic distribution of morbidity attended in hospitals according to the main diagnosis associated with average hospital stay and hospital discharge.

Sponsor, manager or home institution: Instituto Nacional de Estadística (INE).

Type of information: Available variables are the number of hospital discharges and hospital stay.

Filters include the main diagnosis (including cancer), type of hospital admission, reason for discharge and province of hospitalization, age, sex, and place of residence.

Source of information: Hospital's patient register, files, and surveys.

Data level: Regional level is openly available. Patient level requires restricted access.

Number of Records: Covers 90% of the hospitals and 98% of the discharges in all of Spain.

Date range: 1978 onwards (restricted) and 1997 onwards (openly available).

Cancer Areas of Interest: The list can be checked in the following document.

Data access: Regional data openly available here. Reports can also be accessed here. For patient level information, follow instructions presented here.

Information/contact for data request: Contact information.

Database: National Health Survey (ENSE)

[44]

Primary purpose: It is an essential tool for the knowledge of citizens' health, which collaborates with health research and planning of policy making.

Sponsor, manager or home institution: Ministerio de Sanidad and Instituto Nacional de Estadística (INE).

Type of information: Contains information about health status, comprising the occurrence of malign tumors, access to health care, and measure of determinants of health. Monographic reports are also published, including reports on early cancer detection in the nation. All the indicators and variables used in the surveys can be checked here.

Source of information: Populational surveys.

Data level: Regional level and Patient level (microdata).

Number of Records: Varies accordingly to the year. Information about the amount of data can be found within the methodology document for each year, available here

Date range: 2017, 2011/2012, 2006, 2003, 2001, 1997, 1995, 1993, and 1987. Since 2009, it takes place on a 5-year basis.

Cancer Areas of Interest: When it comes to cancer diagnoses, there is a classification for cervical, vaginal, and breast cancer. Other indicators present in the study can be related to different types of cancer.

Data access: Regional level data is openly available here. Microdata can be checked here.

Information/contact for data request: Contact information.

Compilation: Cancer Registries of Autonomous Communities

Primary purpose: Compile information and addresses concerning regional cancer registries in Spain.

Sponsor, manager or home institution: Regarding the compilation of information, Red española de registros de cáncer (REDECAN) is the responsible. Each registry has its own responsible authority.

Type of information: Cancer registries from the Spanish provinces containing incidence, mortality, survival, prevalence and other cancer information. All registries included can be found here.

Source of information: Generally, the regional registries collect information from medical records, but other sources can be present accordingly to each registry. [45]

Data level: Regional level information is openly available at the website of the registries provided in the compilation. Availability and access to patient level data varies.

Number of Records: Varies.

Date range: Varies.

Cancer Areas of Interest: Varies.

Data access: Access to each registry can be found here.

Information/contact for data request: Contact information.

Latest Policymaking Initiatives

Public Health Surveillance (RENAVE)

Primary purpose: Provides information in several formats on cancer mortality .

Sponsor, manager or home institution: Centro Nacional de Epidemiología (CNE) from Instituto de Salud Carlos III.

Type of information:

• Raziel (website) - Presents maps and graphics containing mortality data filtered by sex, type of tumor, age, territory and year.

Available indicators are number of deaths, crude/specific rate, potential years of life lost, rate of potential years of life lost, mean age at death, rate adjusted to the European population, adjusted rate of potential years of life lost (world and European population), rate adjusted to world population.

• Ariadna (website) - Presents maps, rankings, trends and tables of data showing cancer mortality filtered by sex and province/county.

Available indicators are crude rate, European population-adjusted rate, world population-adjusted rate, truncated rate, cumulative risk, comparative mortality index, and number of deaths.

• Reports on the situation of cancer in Spain (website) - Presents data on mortality, incidence, risk factors and survival filtered by sex, region and type of cancer. Provides discussions on this matter.

• Atlas of Cancer Mortality (website).

• Data tables (website) - Presents number of deaths, average age at death, european population-adjusted rate x 100,000, standard error of the adjusted rate, world population-adjusted rate x 100,000, truncated adjusted rate x 100,000, cumulative risk 0-74 years (in percent), and crude rate x 100,000 filtered by type of cancer (cause of death).

• AMICAES: Mobile app (website) - Presents colorful maps to show municipal cancer mortality in Spain.

Data level: Regional level.

Access to information: Information can be accessed here.

Cancer-related Patient Associations and Resources

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: Cancer Care During the COVID-19 Pandemic; Cancer-Related Pain; Immunotherapy-Related Side Effects and Their Management; Survivorship; Personalized Medicine; Colorectal Cancer; Head and Neck Cancer; Cervical Cancer; Endometrial Cancer; Glioma; Hepatocellular Carcinoma; LMA; CML; Follicular Lymphoma; Breast Cancer; Multiple Myeloma; Ovarian Cancer; Pancreatic Cancer; Non-Small Cell Lung Cancer; Testicular Cancer; Soft Tissue Sarcomas; Bone Sarcomas.

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 [11].