Résumé : The Euro-Med-Data (EMD) project was carried out by a working group under the co-ordination of the School of Public Health of the Université Libre de BRUXELLES (Belgium), Department of Health Policies and Health Systems with financial support of the European Commission, under the Health Monitoring Programme. EXECUTIVE SUMMARY The Euro-Med-Data (EMD) project was conceived to take part in the collective effort organised on the European Union level in order to establish community health indicators, to develop a community-wide network for health data sharing and to analyse and report on this data. Its objectives were defined as follows: Ø to inventory the medico-administrative data, routinely collected in 18 European countries at the primary and secondary health care level, as well as at the occupational medicine level (PHC, SHC, OM); Ø to examine this data in terms of data collection process, type of codification, reliability, mobility, mode of concentration, possibility of further analysis and/or reports, type of interpretative framework; Ø to examine the possibilities of transferring this data to a European server and that will handle the problems such as format, language, transfer process, and agreement on designating the person in charge of the data on a local level; Ø to form proposals for feedback of the analysis to the local health care actors; Ø to examine the possibilities for the analysis of the data in order to perform an epidemiological follow-up of public health indicators and health monitoring; There are indeed, at the present time, very few operational European databases in the field of Public Health allowing one to use epidemiological health indicators in order to: Ø monitor the state of health of European populations; Ø evaluate public health needs; Ø assess the use of health care services; Ø and, more broadly, to analyse and fully exploit what is generally meant by Health Monitoring. However, every day, in every European country, medical and administrative data is routinely collected for management or therapeutic purposes, or simply as private memory files. The use of this data for public health management as well as for conducting epidemiological studies is often very far from satisfactory. Furthermore, the lack of feedback to the people who deliver health services generates frustration and promotes a lack of collaboration. The project therefore takes its place in the framework of the hereto accepted 30 other projects. It seems that the EMD project, part of the category of projects linked to a specific collection system, is not redundant but rather complementary in relation to the other project categories, and even to the other ones of the same category. The specificity of Euro-Med-Data lies in the focus on routinely collected data. As we may distinguish different kinds of morbidity indicators (objective, perceived, expressed, diagnosed,…), it is important to notice their conceptual interrelations, and to clearly assess their respective complementary positions in the HIS. Regarding diagnosed morbidity, it is possible to obtain the data from health providers: the data can be based either on probabilistic samples of practices (the sentinel practices network is one example), or on a continuous basis in an integrated routine system. This latter will be the domain to be investigated by the EMD project in three different settings : primary care, secondary care and occupational health. PRIMARY HEALTH CARE General practitioners and family physicians form what is commonly called the primary care level. In several northern European countries, as well as in Italy, Portugal, and Spain, this level plays the role of gatekeeper of the health system. The patient is not authorised to consult a specialised care level (secondary or tertiary care) if he/she has not first consulted a general practitioner with whom he or she generally has a record. This ‘gate’ system is not present in Belgium, France, Germany, Luxemburg, and Greece. It is therefore difficult to obtain a common denominator to set an epidemiological rate. The first step of the research has concentrated on the identification of partners throughout the different countries, i.e. medical doctors and other professionals involved in the elaboration and organisation of continuous registration systems for general practice in medicine. The question of availability of morbidity indicators through these data collections is at the heart of the problem tackled by this analysis. What are the existing databases in Europe? How are they organised? Can the information gathered by these various bases be aggregated and continuously serve as a source of information on the population’s demands for health care as much as on the answers from the health services? Despite certain reservations, the Internet survey form (see chapter II) allowed us to gather essential information on twelve databases. This form was greatly based on work achieved by Dr Job Metsemakers in Holland. In chapter II, one will find a summary of the information obtained, while the entirety of the information collected is available in Access (*.mdb), Excel (*.xls), and text format (*.txt) in the software aid annexed to this report. The various terminologies and classifications were the subject of a study published on the site and featured in the software and annexed to this report. After having explored the various databases in a qualitative and quantitative manner, and outlined the content (chapter III), it seemed constructive to give an overview of the different terminologies and classifications currently available in Europe and in use in the EMR’s or other computerised health systems (see chapter IV). The second step consists in trying to collect data from each participating country to create an international database. This step is quite difficult to address. Although the participants at the first meeting in Brussels have been very enthusiastic, only two have made proposal to exchange information. To build a database in such conditions has no meaning and the research has been continued by editing information already published on the net. Common grounds on methodology of data retrieval and classification tools are lacking in Primary Care and particularly in General practice at the EU level. Moreover only some private or semi-public organisations are collecting data on continuous basis in primary care. The most important ones are mainly for commercial purposes. Some Member States are producing data trough their own department of public health or through university settings in United Kingdom, France, Norway and The Netherlands. However registration tools are quite different. There is no common standard in the classification field. Some systems are using proprietary classification, other use ICD or Read codes and some are using ICPC in its first version. Sharing morbidity data at the PHC level is consequently not feasible although some data are already published and accessible through web sites. (do refer to http://www.ulb.ac.be/esp/emd/database_links.htm and http://www.ulb.ac.be/esp/emd/sharing.htm) The main conclusion is that, even if data gathering in PHC on the basis of the day to day work is in process here and there in Europe in General practice, the utilisation of this data for building up health monitoring indicators at the level of EU is not to be considered yet at the time being. Before this option could be considered, effort has to be made to disseminate standardised and compatible health information collecting systems based on international classifications. The group "Data quality in Primary care " driven by various European researchers is now taking the relay of the EMD study. This study concludes by setting up five recommendations on : the development of an Open Source approach for what concerns the electronic medical files software development; Ø to favour the management of individual data in computerised medical files as community health data; Ø to favour implementation of standardisation process in electronic medical record in Europe in order to enhance the quality of data collection Ø promoting European development in the realm of terminologies and classifications; Ø to support the new research group on “Data quality in Primary care”. SECONDARY HEALTH CARE The secondary health care sector is characterised in Europe by a certain homogeneity for what concerns the medical data collected routinely in the hospitals; this is due to the fact that the national classification systems for hospital data are based on the ICD (International Classification of Diseases), and the consequent proposals resulting initially from Fetter’s works in the USA. The hospital medical data are collected at the request of the Ministries of Health with epidemiological and/or financial purposes (financing of the hospitals) in all the European countries except Germany where these data are not centralised, but are sent to the sickness-benefit fund of each patient with the aim of financing the care for each patient, and subsequently covering the costs of the hospitals. To achieve the goals of this study, the methodology used consisted in identifying partners in each country, in preparing a questionnaire concerning the characteristics and the contents of each medical data file, and in making a test of feasibility for the creation of a European database by the aggregation of samples coming from each country. At the end of this study, we can affirm that the objectives are mainly achieved, with regard to the sector of the secondary care. Indeed, for all the participating countries (except Liechtenstein), we were able to collect information on the hospital medical data recorded routinely in each country. This information (meta-information) is gathered in summary charts (one by country). The test of feasibility of the creation and the exploitation of a European database, realised for 11 participating countries, has very encouraging results because it proves the feasibility of the creation of this European database with the help of the installation of various procedures on the one hand, and the definition of certain terms or variables on the other hand. The exploitation of such database currently allows the construction of 37 health indicators covering the following fields : Ø indicators of morbidity, Ø use of the care of health, Ø surgical operations and procedures Ø and quality and performance of the health care. The conclusions of this test lead quite naturally to proposals on short, average and long term. These should constitute the basis for the continuation of the work in this field of the secondary care, or hospital care. The short-term proposals take again the coordination of the various projects currently in hand or to come concerning these problems, the methods and the creation of the European data base as well as the creation of a conversion chart for the classifications of pathologies and procedures. The medium-term proposals relate to the extension of the content of the database in order to increase the number of indicators which result from it, and to the procedures for enlarging this database to include the candidate countries. Lastly, the long-term proposals concentrate mainly on the evaluation of the possibilities of connection and linking between the primary care database and that of secondary care. OCCUPATIONAL HEALTH The routine collection of data at work presents certain special features related to the actual context of health in the workplace, namely: 1. The existence of a proper legislation; 2. The division of labour and, consequently, of health risks; 3. Medical practice at work has a preventive mission, sometimes a therapeutic mission in the case of health disorders related to the specific exposure and to occupational diseases. It also plays a rehabilitative role in cases of accidents at work and occupational diseases; 4. On the European and national level, the organisations centred on the field of health at work are mainly tripartite structures: government representatives, employers, and workers. During the first phase of the EMD study, the characteristics cited above were identified and their influence on the feasibility of a continuous collection of data was underlined. The second phase focused on: a) the study of European directives relating to the health and security of workers; b) their sectoral application in Member States; and c) the feasibility of their application on the European level. Globally, the conclusion was that a great number of routine data are available at the local level, but it is currently impossible to use them on a regional, national, and a fortiori an international level given the harmonisation problems. Except for data on accidents at work and occupational diseases, the examination of these routine databases demonstrates the impossibility of using these databases as comparable international reference databases in the elaboration of a European morbidity data bank. They are too different from each other and their objectives are usually incompatible with the aims of this study. Finally, a careful analysis was performed on the various indicators for the sector proposed by the ECHI project (Kramers et al., 2001). They were extensively reviewed during the second meeting, on December 5th 2001. This did allow us to formulate recommendations in order to pursue the reflections on indicators of health at work. Short term: some recommendations are made on the possible improvement of the list of indicators, specially for health determinants. Medium term: they concern a better standardisation of data collection, the implementation of additional legislative tools to increase the convergence between countries; a reflection has also to be conducted on the respective advantages of routine and survey data in this field. At longer term, there would be a substantial interest in setting up the statistical tools allowing a linking and a comparison of data on the worker’s characterisation within the firm, on the one hand, and the data on mortality (cause by cause) along with the data related to accidents at work and occupational on the other hand. Download the whole report in PDF : http://www.ulb.ac.be/esp/emd/Emd_rep.pdf