Data collection

Improving health reporting mechanisms


The EU current health information system

The European Commission has funded a study to help the implementation of a sustainable EU health information system. The study analyses the costs and benefits of different options and suggests further steps for improvements.

Recognizing this challenge facing the health information system, the European Commission (DG Health and Food Safety together with Eurostat) is actively working to improve the mechanisms for health reporting and have outlined recommendations and strategies for improving quality, widening access to and improving comparability of health information at EU level.

A common framework to support countries in reporting their health status should be based on the following order that this health information has relevance at EU level:

  • a sound and internationally agreed set of international classifications (e.g. International Classification of Diseases (ICD), International Classification of Functions (ICF), International Classification of Health Accounts (ICHA), etc.); 
  • operational systems for collection of data on the state of health of populations (health surveys, information on hospitals, disease-specific registers, organizations holding data on patients, etc.); 
  • summary measures and population health indicators.

The operational systems for collection of data on the state of health of population work on the basis of different national health policies and health systems, and also differences in the traditional approach to statistics. The creation of a common and comparable framework within the EU ensuring minimum requirements for comparability of health status data will require conceptual clarity, a common set of domains/attributes, comparable resources or procedures, translation of concepts and wording, survey design (sampling, survey implementation, full coverage of the population, procedure for non-response, proxy interviews), commonly agreed reference periods, reliability and validity, etc.

The first phase of data management could encompass:

  • an inventory of sources and methods over the entire EU;
  • an analysis of data needs in the respective fields;
  • a definition of indicators and quality assurance;
  • technical support for activities at national level;
  • data collection at EU level;
  • reporting and analysis;
  • dissemination of results.

In a second phase, the previously defined indicators or the databases would be used on a routine basis. Collaboration and close co-ordination with Eurostat and its partnerships is of the utmost importance at this stage.

In order to create European added value in the improvement of health reporting mechanism, the EU is focusing its activity on the following topics: the European Health Survey System (EHSS), the European Health Examination Survey (EHES) and data collected in hospitals.

European Health Survey System (EHSS)

The Commission adopted the White Paper COM(2007) 630 final "Together for Health: A Strategic Approach for the EU 2008-2013"  on 23 October, 2007, to develop the EU Health Strategy for the period 2008-2013. In the Commission Staff Working Document accompanying this White Paper, strategic objectives are selected with the aim of tackling areas in which strong European added value can be achieved. One of these actions is to improve the collection and compatibility of health data. Current work on developing a system of European system of health indicators needs to be continued, based on common mechanisms for collecting comparable health data such as the European Health Survey System (EHSS). Even the Decision No 1350/2007/EC of the European Parliament and of the Council of 23 October 2007 establishing a second programme of Community action in the field of health (2008-2013), sets as one of the priorities to further develop a sustainable health monitoring system with mechanisms for the collection of comparable data and information.

These are the reasons why Eurostat and DG Health and Food Safety are expanding their actions under the EHSS. The EHSS was agreed by the Directors of Social Statistics (DSS) in 2002 and is supported by DG SANCO Expert Group on Health Information (EGHI) as a framework for a regular collection of harmonized data – allowing inter-country comparisons – by means of surveys and/or survey modules on health. The aim of the EHSS is to set up a system for health data collection via population surveys in order to respond to the information needs of Europeans on the topics of health and health determinants.

DG SANCO considers the development of these actions under the EHSS a high priority as it is a highly valuable tool for providing the comparable data needed to construct indicators to target and evaluate health policies both at the EU and national level. This is particularly significant for the European Core Health Indicators (ECHI)  list as defined in the Community Public Health Programme.

The EHSS is a comprehensive and coordinated set of surveys that are implemented in a flexible and modular manner. The main components are:

  • The European Health Examination Survey (EHES) developed under the responsibility of DG SANCO in the framework of the Community Health Programme and the FP7 Programme.
  • The Mini European Health Module (MEHM) implemented in the annual Eurostat survey on Statistics on Income and Living Conditions (EU-SILC) managed under the Community Statistical Programme. The MEHM is actually used to calculate the structural indicator on Healthy Life Years .
  • The European Health Interview Survey (EHIS), managed by Eurostat under the Community Statistical Programme. The first round of the EHIS has taken place during the period  2006 - 2009 in some EU Members States. The second round has started in 2014 under Commission Regulation (EU) No 141/2013 of 19 February 2013 implementing Regulation (EC) No 1338/2008 of the European Parliament and of the Council on Community statistics on public health and health and safety at work, as regards statistics based on the European Health Interview Survey (EHIS). The aim of the EHIS is to measure the health status, life style (health determinants) and health care services use by the EU citizens on a harmonized basis and with a high degree of comparability among MS. The survey contains around 130 questions with background variables on demography and socio economic status.
  • The European Health Surveys Information Database (EUHSID) maintains and updates a database of the characteristics of major Health Interview Surveys (HIS) and Health Examination Surveys (HES) in Europe.
  • Some auxiliary modules focusing on opinion of citizens on health related problems could be implemented using the European Commission Eurobarometer surveys or, in certain cases, other European surveys such as the Labour Force Survey (LFS).

See also the survey on Health Behaviour in School-aged Children (HBSC), a cross-national research study conducted in collaboration with the WHO Regional Office for Europe initiated in 1982 with more than 40 participating countries and regions.

See also the European Foundation for the Improvement of Living and Working Conditions (EUROFOUND) European Quality of Life Survey carried out every four years on employment, income, education, housing, family, health, work-life balance, life satisfaction and perceived quality of society.

See also the European Monitoring Centre for Drugs and Drug Addiction (EMCDDA) Handbook for surveys on drug use among the general population, 2002.

The European Health Examination Survey

A Health Examination Survey (HES) is a survey that collects health information from both face-to-face interviews and medical examinations. It is a population-based survey specifically designed to investigate health issues; data are collected using survey questionnaires and by means of physical examinations and/or biological testing. This provides more comprehensive results about the health of population than administrative registers, screenings or health interview surveys.

There is a need to develop core modules for a Health Examination Survey in Europe, which could include an interview with a few measurements and/or blood samples, or a comprehensive health examination taking several hours to complete (e.g. cardiovascular diseases, respiratory diseases, diabetes). Mental and dental health issues were often the subject of separate surveys and therefore rarely included in national general health surveys. Some risk factors can only be identified by clinical measurements such as blood pressure, blood lipids, height and weight, or blood glucose. These measurements can be combined with a home health interview. Other HES-specific measurements are electrocardiograms (ECG), bone density, spirometry or measurements of physical or cognitive functions. Some mental health measurements based on relatively long questionnaires can be equated with clinical measurements, and further clinical information can be obtained by clinical examinations carried out by dentists and doctors. This would enable the actual prevalence of many diseases to be assessed.

In 2006, the European Commission selected the FEHES (Feasibility of a European Health Examination Survey) project for funding. This project was lead by the National Public Health Institute of Finland (KTL) with the aim of examining and analyzing the feasibility of carrying out a European Health Examination Survey (EHES), or repeated national HES, in the EU Member States. The project supported the exchange of information between the Member States that experienced HES implementation with those that did not.

In 2008, the FEHES project made some recommendations concerning the structures that would be required in order to carry out standardized national HESs in the participating European countries, and to propose the standards for such surveys. These recommendations were endorsed by the European Commission to serve as basis for a future European Health Examination Survey.

The Call for Tender 2008/S 163-219619 from the European Commission (July 2008): The development and planning of a pilot European Health Examination Survey in European Union and EFTA Member States in preparation to test examination modules and field procedures for this survey was launched in 2008. This has permitted the creation of a European Health Examination Survey Reference Centre (EHES RC) located in Finland leaded by the THL (National Institute for Health and Welfare).

In 2009, work on EHES took a greater dimension with the selection of the European Health Examination Survey Pilot Joint Action (EHES JA) to support the national activities needed to build the capacity for organizing HES in 14 countries. The partners work in collaboration with the European Health Examination Survey Reference Centre (EHES RC).

The aim is to plan and prepare for a full-scale HES in the 14 countries, and to pilot the fieldwork, data collection, assessment and reporting. The full-size HESs will provide comparable information on major chronic disease risk factors and disease prevalence. Specific objectives are:

  • 1. To prepare national HES plans for the partners of the Joint Action.
  • 2. To prepare detailed sampling description for the piloting countries.
  • 3. To complete the national HES pilot field work.
  • 4. To transfer pilot survey data from partner countries to the EHES RC and assessment of the data.
  • 5. To share the national experience among the partners.
  • 6. To plan the reporting of the national results of the full-size HES, and report the results of the national pilot HES.

At the end of the Joint Action, the detailed plans and the necessary preparations will be in place so that the full-size national HESs to be carried out in the partners' countries can produce high quality comparable data on key health indicators. The partners will be ready to start the field work of the full-size HES in their countries after the pilots have been evaluated. This full-size HES can be a new survey, a HES component added to an established Health Interview Surveys (HIS), or an established national HES adapted to EHES standards.

Focusing first on a core set of measurements in the adult population will help to build a basic structure which can later be expanded to other countries and to cover other health topics in periodically repeated surveys.

The future European Health Examination Survey (EHES) will integrate the Human Biomonitoring (HBM) dimension. HBM is a scientific technique for assessing human exposures to environmental agents and their effects, based on sampling and analysis of an individual´s tissues and fluids. While blood, urine, breast milk and expelled air are most commonly measured, hair, nails, fat, bone and other tissues may also be sampled. The Commission is supporting the FP7 Project Consortium to Perform Human Biomonitoring on a European Scale (COPHES) in order to harmonise national and local activities on HBM to contribute to better data comparability across the EU and to coordinate HBM programmes across the EU.

The COPHES Project has been expanded with a new project DEMOCOPHES, a pilot study that will look at biomarkers for mercury, cadmium, phthalates as well as environmental tobacco smoke in human hair and urine. The project will collect samples and data from 120 mother-child pairs in each participating country.

Information collection system for: hospital activities

The use of information coming from hospital diagnoses (secondary care) offers a substitute for other morbidity sources when this are lacking. It has to be pointed out that, in the context of the improvement of mechanisms for reporting health, hospital discharges for a particular disease do not equate with the incidence of this disease, although they can be closely correlated. Indicators based on hospital discharges for particular diseases could be used as an estimate of a 'burden' of given diseases on health services, rather than as an estimate of disease incidence, i.e. the real burden on the population.

Hospital information gives a broad picture of the general health of and the healthcare provision for the population. Hospital discharges, rather than admissions, are used because hospital abstracts for in-patient care are based on information gathered at the time of discharge. However, there are not reliable data available at EU level concerning diagnoses upon readmission. Discharge statistics are based on counts of hospital discharges, which are counts of events, not patients. For example, a patient admitted and discharged three times during the reporting year would be counted as three discharges in the most part of Member States.

General problems in hospital discharge statistics were studied in the context of the Hospital (Activity) Data Project 2 (HDP2) supported by DG Health and Food Safety. The overall objective of HDP2 was to produce an internationally comparable hospital activity data set for Europe. Areas of comparability were maximized by using the joint (Eurostat, OECD, WHO) System of Health Accounts functional framework to define the activity to be included (and excluded) from the data set and by mapping the content of national activity data sets and basing data item definitions on what is commonly available.

Statistics on hospital discharges are available on Eurostat web site. The hospital discharges are described according by means of a short list of selected diseases defined as the International Shortlist for Hospital Morbidity Tabulation (ISHMT). This shortlist for statistical comparison of hospital activity analysis was adopted in 2005 by Eurostat, the OECD and the WHO. It follows the International Statistical Classification of Diseases ICD-10 codification. A discharge from a hospital or another healthcare facility is deemed to have occurred each time a patient (or resident) leaves because of death, discharge, self-discharge medical advice or a transfer. The number of discharges is the most commonly used measure of the level of use of hospital services. Discharges, rather than admissions, are used because hospital abstracts for in-patient care are based on information gathered at the time of discharge. The discharge rates are expressed as the number per 100,000 population. The definition of hospitals follows the International Classification for Health Accounts (ICHA).

See the Hospital (Activity) Data Project 2 (HDP2)
See the Hospital Data Project outcomes: June 2003 report, summary, article
See International Shortlist for Hospital Morbidity Tabulation (ISHMT)
See International Classification of Diseases ICD-10
See Discharges from hospitals per 100 000 inhabitants

Disease-specific registers

Disease-specific registers are primarily a source of incidence data, although they can be used to get estimates of prevalence where no other sources exists. Registers are only likely to be created for a limited range of diseases or disorders. They are often a labour-intensive and costly source of statistics and information, involving continuous record-keeping over a number of years.

Registers have an advantage over many other survey sources in that they identify diseases on the basis of medical diagnosis. Although medical notes do not always provide complete data recorded in a consistent way, cross-checks with different sources can improve the accuracy of a register.

Decision No 1786/2002/EC of the European Parliament and of the Council of 23 September 2002 adopting a programme of Community action in the field of public health (2003-2008) - Commission Statements, specifies as one of the priorities the provision of support for activities relating to consultation, knowledge and information to improve the system for the transfer and sharing of information and health data including public access, and to develop strategies and mechanisms for preventing, exchanging information on and responding to non-communicable disease threats, including gender-specific health threats and rare diseases.

The Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare, specifies the need of effective methods for enabling the use of medical information for public health and research.

Regulation (EC) No 1338/2008 of the European Parliament and of the Council of 16 December 2008 on Community statistics on public health and health and safety at work, specifies that statistics shall include, in the form of a harmonised and common data set, information required for Community action in the field of public health, for supporting national strategies for the development of high-quality, universally accessible and sustainable health care as well as for Community action in the field of health and safety at work.

Registers for non communicable diseases at European level

The possibilities for developing national registers will vary between countries, depending on priorities and on factors such as population size and data protection considerations. The development of European registers will depend on national developments.

The registers are generally set up only for diseases for which there is pressure to have detailed morbidity analyses, such as cancer

See the European Network of Cancer Registries

European Union initiatives to set up European registers exist also for diabetes and for multiple sclerosis.

See proposal for a European Register for Multiple Sclerosis

See European Union project EUropean Best Information through Regional Outcomes in Diabetes

Registers for communicable diseases at European level

The ECDC (European Centre for Disease Prevention and Control) is responsible for the surveillance of infectious diseases in the European Union and shall maintain the databases for epidemiological surveillance. Data are collected by the ECDC for case-based reporting from the Member States for the routine surveillance of the 46 diseases (listed in the Commission Decisions 2002/253/EC and 2003/534/EC) plus SARS, West Nile Fever and Avian Influenza.

See ECDC European Surveillance Networks

Registers for rare diseases at European level

Registries and databases constitute key instruments to increase knowledge on rare diseases and develop clinical research. They are the only way to pool data in order to achieve a sufficient sample size for epidemiological research and/or clinical research. They are the only way to pool data in order to achieve a sufficient sample size for epidemiological research and/or clinical research as specified in Commission Communication COM (2008) 679/2 to the European Parliament, the Council, the Economic and Social Committee and the Committee of the Regions on Rare diseases: Europe’s challenges , as well as in Council Recommendation, of 8th June 2009, on a European action in the field of rare diseases.

The Orphanet network has listed all the rare diseases registers existing in the European Union, a total of 514 from which 50 having a European dimension and 29 a global dimension.

See Rare Diseases Registers in Europe – Orphanet