1 The German Health Reporting System and Current Approaches in Europe A Comparative View on Differences, Parallels and Trends Health reporting on a national basis was introduced in Germany in 1998 and has been carried on successfully since. International cooperation, particularly within the framework of the European Union, is an increasingly important feature of health reporting. Proceedings of the International Conference Berlin, November 2001 Representatives from 25 European countries took part in the international conference The German Health Reporting System and Current Approaches in Europe hosted by the Robert Koch Institute in November Health reporters, scientists and policy makers from the health policy and administration arena came together in Berlin to discuss current challenges and methodological developments of health reporting in a comparative perspective. This volume is not only a documentation of the conference proceedings, but also contains a number of original postconference contributions on current key aspects of health reporting in Europe: t The evaluation of health reports and their impact on policy t The relationship between health targets and health monitoring t Gender Mainstreaming and population group specific approaches t Comparative regional and transnational health reporting t Concept and design of web-based health information systems Robert Koch-Institut ISBN x The German Health Reporting System and Current Approaches in Europe robert koch institut robert koch institut
2 The German Health Reporting System and Current Approaches in Europe A Comparative View on Differences, Parallels and Trends Proceedings of the International Conference Berlin, November 2001 Robert Koch-Institut, Berlin 2002
3 3 Bibliographic information published by Die Deutsche Bibliothek Die Deutsche Bibliothek lists this publication in the Deutsche Nationalbibliografie Contents Foreword Editor Robert Koch Institute Editing Ralph Döring Robert Koch Institute Federal Health Reporting Seestraße 10 D Berlin Translation Anne Carney, Berlin Manfred Frank, Berlin Typesetting Satzinform, Berlin Printing H&P Druck, Berlin ISBN x Part I Presentations to the plenary sessions 1 National Health Reporting in Germany Thomas Ziese 2 The Information and Documentation Centre Health Data Winfried Eberhardt 3 The EU Health Monitoring Programme Hans Stein 4 Differences in Health Reporting within the European Union: Challenges or Obstacles? Peter W. Achterberg 5 Do Health Reports Meet the Information Needs of their Users? Hans Stein 6 Health Information Sources and Data Collection in Estonia Ain Aaviksoo, Ene Palo 7 The National Health Reporting System in the Czech Republic Miloslava Chudobová, Marie Jechová 8 Current Developments and Major Findings of Health Reporting in the European Part of the Russian Federation Gennady V. Kipor Part II Abstracts and summaries of the workshops Workshop A Indicator- and Issue-related Approaches to Health Reporting Benefits and Problems Workshop B Regional and Local Health Reporting in Europe
4 4 5 Workshop C Transnational Cooperation Public Health Reporting in Euregios Workshop D Comparing Different Methods and Instruments of Public Health Reporting Workshop E Evaluation of National and Regional Public Health Reports in the European Union Workshop F How to report on specific sections of the population? Workshop G Health Reporting and the Development of Health Targets Workshop H Making Better Use of New Information Technologies Part III Post-conference contributions on current key issues of health reporting in Europe 1 Evaluation of National and Regional Public Health Reports in Europe A Research Project in Progress Birgit Cornelius-Taylor, Helmut Brand, Peter W. Achterberg 2 Evaluation of Public Health Reporting Methodological Considerations with Special Reference to the Swedish Experience Måns Rosén 3 Change and Challenges the Production of Annual Public Health Reports in the United Kingdom Diane Budden, Martin McKee 4 Health Targets from an International Perspective Mathias Wismar 5 The Forum Health Targets Germany gesundheitsziele.de Kerstin Horch 6 The Interaction between Health Reporting and Health Targets in Germany Conceptual Thoughts and Experiences from North Rhine-Westphalia Birgit Weihrauch 7 A Transnational Health Report for the Upper Rhine Valley Daniela Krämer 8 Gender Sensitiv Health Reporting for Germany Cornelia Lange 9 Health Reporting on Specific Groups of Vienna s Population Eleonore Bachinger 10 Basis, Content and Use of Health Information Systems Placing Different Exercises into a Theoretical Framework Mikko Nenonen Part IV List of Conference Participants
5 7 Foreword With the publication of the first comprehensive Health Report for Germany in 1998, health monitoring at national level was established as a routine task in Germany. The Robert Koch Institute provides up-to-date and practical information through a series of information booklets on specific health topics. The Information and Documentation Centre for Health Data at the Federal Statistical Office provides the necessary current, valid data for this purpose. Both the data and the information booklets are available on the Internet. In the meantime, a health reporting network has evolved, linking national, state and communal health monitoring in Germany. The objective is to enable both, national and international comparisons on the basis of the data and health information presented. Hence international cooperation, particularly with the Member States of the European Union and with the acceding countries of Central and Eastern Europe is becoming increasingly important. Along with other health research and public health service institutions, the Robert Koch Institute actively participates in a number of projects within the framework of the Health Monitoring Programme of the European Commission. The Federal Statistical Office is also integrated into the European context, mainly as a result of its cooperation with EUROSTAT. In order to further cooperation at European level and to present German health monitoring, the Robert Koch Institute hosted the international conference The German Health Reporting System and Current Approaches in Europe in November In a continuation of the 1998 Bilthoven workshop Health Reporting in the European Union, scientists, health policy makers and administrators from 25 European countries debated current challenges and methodological core questions of health monitoring. The conference not only set the stage for a lively exchange, both on a professional and interpersonal level, but also gave experts from Eastern and Central European countries an opportunity to exchange experiences at length with their colleagues from the EU Member States. Of approximately 100 participants, almost half presented a contribution for discussion. This willingness to participate and the high level of commitment demonstrated by experts from the field contributed in large measure to the success of this volume. For this we wish to express our thanks. We also wish to thank the Federal Ministry of Health for providing financial support for the conference. In addition to providing a documentation of the conference proceedings, this volume also contains a series of original post-conference contributions on key aspects of health reporting in Germany and Europe. Three of the papers examine the political impact of health reports from European, Swedish and English perspectives. The interaction between health targets and health monitoring is presented both in a national and international context, and from the viewpoint of a single German federal state. The contribution from the Upper Rhine Valley familiarizes us with the emergence of regional and transnational health reports and their special uses. In the section on population group specific approaches the development and objectives of gender sensitive health reporting are dealt with, before going on to describe a whole spectrum of group specific health reports using health monitoring in the City of Vienna as an example. The concluding contribution from Finland deals with aspects of applied information theory and concepts of web-based health information systems. We were very pleased that the participants viewed the Berlin conference as a worthy continuation of the 1998 meeting Health Reporting in the European Union in Bilthoven and the 1999 conference The New Public Policy in the European Union in Potsdam. Encouraged by this, we hope that these conference proceedings will contribute to an on-going process of discussion to determine the focus of future health monitoring and provide a basis for further pan-european meetings on health reporting. Bärbel-Maria Kurth, Robert Koch Institute
6 9 Part I: Presentations to the plenary sessions 1 National Health Reporting in Germany Thomas Ziese, Robert Koch Institute, Berlin In Germany, health reporting at national level is an instrument that has been introduced quite recently. Following a research phase of several years, health reporting at federal level, a project conducted by the Robert Koch Institute in cooperation with the Federal Statistical Office, began to be operated routinely about two years ago. This contribution, which was presented as a plenary paper at the conference entitled The German Health Reporting System and Current Approaches in Europe, will provide a brief overview of the objectives and approach of health reporting at federal level in Germany. In the second section, reference is made to the field of cooperation which plays a major role in health reporting at federal level, thus leading the reader to subsequent contributions and interesting discussions in the sense of the subtitle of the Conference, i.e. A Comparative View on Differences, Parallels and Trends. 1.1 Health Reporting at Federal Level in Germany The task of health reporting at federal level is to draw an adequate picture reflecting the health status of the population or selected population groups, their health behaviour, the distribution of risk factors, the health care consumption and the costs and resources of the health system. Health reporting is commissioned and financed by the Federal Ministry of Health and Social Security, which is responsible on the political level. Health reporting provides information on health-relevant issues oriented towards measures to be taken, i.e. to provide a scientific basis for rational health policy-making. There are two prominent objectives: Ω Information on and identification of action to be taken within the health system. Ω Monitoring: Reporting on the quantity and quality of the disease-related situation and identification of discrepancies between services needed and those offered. A multi-institutional approach has been taken to achieve these objectives. Organizational responsibility for health reporting at federal level lies with the Robert Koch Institute. To accomplish the tasks involved, the Robert Koch Institute cooperates closely with the Federal Statistical Office and its Information and Documentation Centre on Health Data, taking into account the interests of and impulses given by the various institutions of the German health system involved and giving regard to the information needs of the users of health reporting data. Products of health reporting at federal level Health reporting at federal level is subject-oriented and its products are published on a continuous basis. Activities concentrate on two products, i.e. Ω Publications on health reporting (Themenhefte der Gesundheitsberichterstattung des Bundes [a series of publications on specific subjects of federal health reporting], Gesundheitbericht für Deutschland) Ω The information system on federal health monitoring 1 1 Eberhardt, The Information and Documentation Centre Health Data, in this volume
7 10 11 These two products, which are closely linked to one another, cover the following fields: Ω Basic conditions of the health system; Ω The health situation of the population; Ω Health behaviour and health risks; Ω Diseases; Ω Health care system resources; Ω Benefits and utilization of the health system; Ω Expenditure on, costs and financing of the health system. This structure is more or less the same in most countries. It is compatible with the structure of health reporting carried out by the federal Länder Table 1 Subject fields of health reporting Basic conditions of the health system Ω Basic political, institutional, demographic, social and economic conditions and their development Health situation of the population Ω Mortality, general morbidity, subjective health status, complaints, sequelae of disease Ω Handicaps, premature pensioning, inability to work, need for care Ω Health status of specific population groups Health behaviour and health risks Ω Risks arising from lifestyle, behaviour, social and environmental conditions, work, leisure time, road traffic, health-conscious behaviour, iatrogenic risks Diseases Ω Single diseases, groups of diseases, health problems and by the WHO, and also gives regard to the development of a health reporting system of the European Union, which is currently under way. 2 Based on this structure, federal health reporting offers reports on about 150 subjects from the field of health (cf. Table 1). The individual reports follow a uniform pattern and have been edited in such a way that for the reader, they present a comprehensive picture of the respective subject. Beyond this, there has been an overall coordination of the subjects covered. Taken together, the individual subjects form a comprehensive health report, which practically considers all essential aspects of health and the health system. A reporting system whose contents are pro- Resources of the health care system Ω Public health services, industrial safety, medical practice, pharmacies, paramedical practice, health-related trades, hospitals, rehabilitation institutions, long-term care institutions, ambulance services, emergency services, research institutes, pharmacy, medical devices Ω Health and long-term care insurance, accident insurance Ω Persons gainfully employed, professional formation Benefits and utilization of the health system Ω Health protection, preventive health care, early recognition of disease, ambulant medical, dental and paramedical care administered, medicines, hospital care, rehabilitation, patient care, ambulant surgery, dentures Expenditure, costs and financing Ω Spending by type of care administered, sector involved, type of disease and population group Ω Cost structures, income, prices, funding by financing institution, amount to be borne by patients vided continuously by way of single reports on specific subjects has obvious advantages over reports covering several years. Ω Reports on specific subjects are more up-to-date than reports published at intervals of several years. Ω The spectrum of subjects is more flexible. While in the case of reporting at intervals of (several) years, subjects are covered independently of their current dynamics, at a fixed date. The method chosen permits coverage of a specific subject when new developments arise. Ω A mode of publication oriented by the dynamics of the contents leads to a broader spectrum of subjects covered by health reporting. While in the case of annual publication, resources are spent on the updating of many data without any concomitant new conclusions, the proposed form of publication will enable consideration of a wider range of subjects at the same expenditure of resources. Ω There will be an improved service to satisfy the interests of individual groups of users in information on health reporting. As a result of continuous publication of analyses on selected subjects, focal groups of users may be approached and addressed in a better way. There are two routes of dissemination of health reporting at federal level by publication via print media (available on and through the GBE health information system (www.gbe-bund. de). By integrating the reports on selected subjects in the health reporting information system, the most recent version of the entire spectrum of subjects will be available at any given time. Simultaneously, additional information on the data sources used and comprehensive literature references are made available. The product range of the volumes published on selected subjects is completed by in-depth-reports, dealing in more detail with selected topics. The size and extent of in-depth scientific descriptions of these two satellite publications go beyond the conceptual requirements for volumes of the GBE series and address a specifically defined readership. 1.2 The key feature of health reporting: Its collaborative character In many other countries, the objectives and features of health reporting have been implemented likewise or in a similar way. In the following, some details will be presented to describe both the cooperative and comparative approaches of health reporting at federal level, which offer the best chances for linkage to national and international cooperation. The German health system is characterized by a high level of decentralization compared to health systems in other countries. Thus, the spokesman for health issues of one of the major parties in the German Bundestag declared that only five politicians would understand the German health system. 3 Most probably, such a statement is exaggerated and not correct but at any rate, the quotation illustrates the high degree of pluralism and decentralization that is present. Within the health system, a variety of tasks and responsibilities are handled at federal government level, at Länder level and at local government level. This vertical structure is completed by a number of horizontal links as e.g. those between health insurance bodies, physicians associations, welfare organizations and hospital associations, to mention only a few. The classical health policy cycle is based on the existence of a clearly defined responsibility for decisions, receiving the results of reporting and converting them into action. First results of an analysis of those making use of federal health reporting in Germany have shown that we have to deal with a high number of users with differing information needs. Owing to the complex structure of the German health system, such a result was to be expected. The system of federal health reporting takes these different needs for information on different levels into account by involving as many actors within the health system as possible, both on the level of co-ordination (Commission on Health Reporting) and the working level (authors of health reporting). 2 cf. Stein, The EU Health Monitoring Programme, in this volume 3 quoted from A Z/Gesundheit-und-Soziales-, /Interviewmit-Bundesministerin.htm
8 12 13 Cooperation with actors The Commission of Health reporting of the Robert Koch Institute constitutes the most important stewardship and advisory panel within the health reporting system at federal level. The terms of reference of the Commission include advice on the contents of health reporting and quality assurance, as well as advice on the development of intermediate and long-term objectives of health reporting. The Commission assists and promotes cooperation with all actors within health system and the organs of self-governance. Another important task of the Commission consists of the selection of topics proposed for updating Table 2 Relevance criteria for health reporting topics Distribution Ω Prevalence of diseases/health problems and/or risks, incidence, mortality, distribution of specific risks Individual importance Ω Risk potential, case fatality, level of suffering, physical, mental, social and financial consequences, sequelae, potential for therapy, problems of access to and use of medical care, quality of care Group-specific importance Ω Age- and sex-dependent differences, social gradients in distribution, care administered or consequences, regional differences, special risk groups Social importance Ω Demographic influences and/or consequences, mortality, potential years of life lost, disability, need for long-term care, share in the situation regarding inability to work and pensioning, availability of resources, services offered and volume of services, consumption of resources, oversupply or undersupply, costs and possibly arising problems of their distribution among those who have to bear them, (regional) economic importance, need for research and/or additional topics to be included in the spectrum of subjects. A catalogue of criteria (cf. Table 2) is used by the Commission to establish a list of priorities for the contents of forthcoming publications. The Commission has 13 members, among whom are representatives of health sciences, health insurance bodies, physicians and physicians associations. It furthermore includes representatives of health politics and health reporting experts from local government, the federal Länder and international health reporting. This interdisciplinary composition of the panel ensures the receipt of impulses for an onward development of health reporting from all important partners and decision makers in the public health sector. International importance Ω Suggestions based on international differences or trends, transnational influences Legal and political framework Ω Statutory instruments, guidelines, health targets, influences of health politics and consequences Population-related dynamics Ω Risk of infection, risk changes, incidence changes, prevalence changes, changes in utilization of services changes among specific population groups) Influencing potential Ω Potential for prevention, identifiability of risk groups, curability, potential for rehabilitation, potential for control, chances of implementation, urgency Social trends Ω Changes of important basic conditions of demographic, social, ecological, legal, etc. nature Cooperation with experts Federal health reporting defines itself as an interdisciplinary project and thus takes into account the complexity of the field of public health as well as of the pluralistic and decentralized German health system. Apart from the quality of the underlying data, a high quality of health reports demands experience and expertise when analysing and evaluating these Figure 1 Structure of Federal Health Reporting Federal Ministry for Health and Social Security Commission on Health Reporting Authors Robert Koch Institute Authors Authors Information and Documentation Centre Health Data Federal Statistical Office Authors Table 3 Examples of cooperation partners of federal health reporting Cooperation partners data. Thus, an analysis of smoking behaviour requires experience which is completely different from that needed for a description of the consequences of insurance for long-term care, to name just an example. Such knowledge in a specific field becomes particularly important for those fields of health reporting where recommendations for action are given. While in many fields a status quo analysis may be conducted by persons with a general knowledge of public health, a qualified formulation of needs for action and corresponding recommendations often requires specific knowledge of the field involved and the prevailing situation, which as a rule will only be available to experts in the field. For these reasons, federal health reporting is accomplished in cooperation with numerous other authors. The experts represent quite different fields and of course come from those of epidemiology, clinical medicine and public health, but also from economics, social sciences, social associations, or governmental institutions. In Table 3, a number of institutions are listed which carry responsibility for authorship of contributions to the volumes on specific subjects. Max-Planck-Institut für Psychiatrie und Klinische Psychologie München (Max Planck Institute for Psychiatry and Clinical Psychology) Institut für Sozialmedizin, Epidemiologie und Gesundheitssystemforschung Hannover (Institute for Social Medicine, Epidemiology and Health Systems Research) Deutsches Diabetes Forschungsinstitut an der Heinrich-Heine Universität Düsseldorf Düsseldorf (German Diabetes Research Institute, Heinrich Heine University, Düsseldorf) Bundesinstitut für Sportwissenschaft Bonn (Federal Institute of Sports Science) Verband Deutscher Rentenversicherungsträger Frankfurt a. M. (Federation of German Pension Insurance Institutions) Humboldt-Universität/Institut f. Tropenmedizin, Medizinische Fakultät Charité Berlin (Institute for Tropical Medicine, Charité Medical Faculty, Humboldt University) Medizinischer Dienst der Spitzenverbände der Krankenkassen e. V. Essen (Medical Advisory Service of Social Health Insurance) Universitätsklinikum Hamburg-Eppendorf, Klinik und Poliklinik für Innere Medizin Hamburg (Hospital and Polyclinic for Internal Medicine, Hamburg-Eppendorf University Hospital) Bayerischer Forschungsverbund Public Health München (Bavarian Public Health Research Centre) Bundesinstitut für Arzneimittel und Medizinprodukte Bonn (Federal Institute for Drugs and Medical Devices) Institut für Medizinische Psychologie, Klinikum der Friedrich-Schiller-Universität Jena Jena (Institute for Medical Psychology, Hospital of Friedrich Schiller University, Jena) City
9 14 15 The close cooperation of various experts with the Robert Koch Institute offers, in addition to aspects of quality assurance, further advantages for the entire system of health reporting: Ω It can be assumed that owing to the active participation of representatives of the public health community in the production of health reports, the results of health reporting meet with better acceptance and use. Ω In this way, additional sources of data are also made available for health reporting, which so far had been used to a limited extent or not at all. Cooperation with other reporting systems In addition to immediate tasks as part of the monitoring system at national level, federal health reporting also serves as an interface in the vertical health monitoring system of the regional levels, in particular regarding cooperation with health reporting by the federal Länder and at international level (cf. Fig. 2). Figure 2 Compatibility of health reporting systems at different levels EU Federal Government Länder Local Government Data Sources Subjects Indicators To this end, it is necessary to remove the discrepancy between two apparently contradictory demands on the health reporting system: On the one hand, health reporting should tailor its products to the needs of the clients for the respective region and in accordance with the potential for action available to the respective actors. The results and the products of a health reporting system should be guided by the expectations and requirements of its users and principals, to accomplish its tasks. Thus, variability in health reporting is both meaningful and unavoidable. On the other hand, there is the requirement of the best possible comparability, particularly regarding data and results. To enable an identification and analysis of regional differences, largely comparable health information is the decisive prerequisite. As a rule, the process of giving data sources on different administrative levels a uniform structure will be a rather slow one, since these data sources are used by health reporting only on a secondary level and can thus be influenced to a limited degree only. An exception is made by health surveys whose adaptation to the information needs of health reporting is comparatively easy. However, the assumed contradiction between specificity and comparability may be removed at the level of indicators because these are generated on the basis of primary data sources and thus, on principle, may also be modified within the health reporting system. Vertical harmonization: German federal Länder and EU as examples Cooperation between the federal and Länder levels plays a special role. Federal health reporting provides a reference option for health reporting by the Länder so that the latter have the possibility of drawing a comparison between the respective changes at the Länder level and developments at federal level. For this purpose, close cooperation exists between the health reporting systems at the Länder and federal levels. Thus, in the process of revising the indicator set used by the Länder, great value has been attached to comparability of indicator sets used at the federal and Länder levels. In part, identical indicators have already been used at the federal and Länder levels. Plans exist to make the indicator set with its regional structure used by the Länder available through the information system of federal health reporting. In order to improve the institutional cooperation, the Robert Koch Institute organizes annual workshops on topical issues for further discussion of current developments and health reporting projects. These workshops have proven to be quite a helpful instrument. In 1997, the EU started a framework programme entitled The European Union Health Monitoring Programme 4 under which a number of projects have been financed which, as a first objective, are to permit the harmonization of a variety of regional and national methods of health reporting. In this context, the Robert Koch Institute has participated in a number of projects (The State of Health in the European Union; Design for a Set of European Community Health Indicators; Health Surveys: Content and Data; Methodologies for Producing EU-wide Comparable Disease-Specific Morbidity Data). The project entitled Design for a Set of European Community Health Indicators which is coordinated by RIVM (Netherlands) is a key project to develop a draft for a future health reporting indicator catalogue at EU level involving almost all Member States. The participation of the Robert Koch Institute in this working group ensures compatibility of the German indicators with the proposed EU indicators in a large number of fields. Horizontal harmonization A flexible and, if possible, multi-compatible set of health indicators may also be used for horizontal harmonization of the reporting systems in other fields of politics. Thus, most fields of politics outside that of health have reporting systems of their own, such as those on working conditions, the environment, social conditions etc. The aspects of working conditions, the environment and social conditions as such also form part of health reporting; likewise, the aspect of health is part of the other reporting systems. Decision makers in fields of politics and society outside that of health will be very effectively reached by their specific reports. The use of common health indicators by different reporting systems will thus offer a chance to effectively establish the aspect of health in as many fields of politics as possible ( health mainstreaming ). For example, health reporting indicators could be used to ensure that the aspect of health is given regard in the National Action Plan on Sustainability. It is also envisaged to use the set of health indicators used in federal health reporting for the next Poverty and Wealth Report by the Federal Government, which will cover social and financial conditions in Germany. 1.3 Outlook Health reporting has been routinely used as an instrument for well over 2 years now. This means that it is still too early to provide empirical statements regarding its efficiency. Nevertheless, some information can be given as to the level of interest in its products, which may well be taken as an indicator of its acceptance by users. A good number of copies of the regular series of health reporting volumes have been distributed. So far, more than 100,000 printed copies have been ordered. Each month, more than 20,000 users have visited the special web pages of the Robert Koch Institute where these publications can be downloaded. Interest among users in the health reporting information system (www.gbe-bund.de) has been similarly high. Thus, federal health reporting has at its disposal a much used, flexible reporting and information system permitting adaptation to current developments and focal points of interest in the health system at short notice. It is thus prepared to play an important role in the process of defining national health targets 5, and in their evaluation. References Arbeitsgemeinschaft der Leitenden Medizinalbeamtinnen und Medizinalbeamten der Länder (AGLMB) (2000): Indikatorensatz für die Gesundheitsberichterstattung der Länder. Zweite, überarbeitete Fassung Riedmann K (2000): Gesundheitsbericht für Deutschland Erste Ergebnisse einer Nutzeranalyse. In: Bundesgesundheitsblatt 43, Statistisches Bundesamt (1998): Gesundheitsbericht für Deutschland. Metzler-Poeschel: Stuttgart Ziese T (2000): Beginn der Routinephase. Die Gesundheitsberichterstattung des Bundes. In: Bundesgesundheitsblatt 43, Stein, The EU Health Monitoring Programme, in this volume 5 See in this volume: Workshop G and Horch, The Forum Health Targets Germany
10 The Information and Documentation Centre Health Data Winfried Eberhardt, Federal Statistical Office, Bonn/Wiesbaden The Information and Documentation Centre Health Data (IDG) is located at the Bonn branch of the Federal Statistical Office. Its purpose is to provide detailed (numerical) information about the German health care system that is otherwise hard to find or not accessible at all. For a large part, the data is presented online on the internet (www.gbebund.de), mainly in the form of approximately 650 informative indicator tables. Readily comprehensible texts and charts supplement the data offered, yet the clear focus is on statistical data. Addressees are politicians, journalists, scientists, students, and citizens in general. With current access rates of up to 9,000 visits and between 2,000 and 6,000 downloads per month, the system is well used. With a current staff of 15 people, the IDG serves as a place for the collection of data from a great variety of organisations. At present, there is more or less intense cooperation with 60 different organizations, which together have at their disposal approximately 140 data sources. A short excerpt from the list will give an impression of the wide range of istitutions included: Ω Association of Private Health Insurance Companies Ω German Council on Addiction Problems Ω German Foundation for Organ Transplantation Ω German Institute for Economic Research Ω German Nutrition Society Ω Federal Association of Health Service Affiliated Practitioners Ω Federal Dental Authority Ω Federal Environmental Agency Ω Federal Ministry of Health Ω Federal Ministry of Labour and Social Affairs Ω Federal Statistical Office Ω Federation of General Social Health Funds Ω Federation of the Pharmaceutical Industry Ω Robert Koch Institute The data base will be expanded according to current needs (e.g. data for health reporting booklets published regularly by the Robert Koch Institute) Beside numerical data, the IDG also gathers detailed background information on the data, i.e. data source, contact person and methodology of data collection. Moreover, expert knowledge and assessment are available. They stem from the various reports produced between 1998 and 2001 (e.g. Health Report for Germany, Special Report on Allergies) within the framework of the research project Development of A Federal Health Monitoring System HMS. The project was funded by the Federal Ministries of Health and of Education and Research. Further expert knowledge comes from the issue-oriented Health Monitoring Booklets published regularly by the Robert Koch Institute. These publications are available in German only. For all types of information, special emphasis is put on data quality. In addition to the information system provided on the internet (IS-GBE), there is also an information service that deals with queries coming in by telephone, fax, or via the contact page included in the IS-GBE. 2.1 Subject fields of Federal Health Monitoring Topics covered by the IDG can be broken down into the following fields, which also form the top level for the hierarchical topical search in the IS-GBE: Ω Basic conditions of the health system Ω Health situation of the population Ω Health behaviour and health risks Ω Diseases Ω Resources of the health care system Ω Benefits and utilization of the health system Ω Expenditure on, costs and financing of the health system 2.2 The Information System on Federal Health Monitoring The software for the Information System on Federal Health Monitoring has been developed and is now operated by IDG staff, with the help of an external contractor. For data retrieval, the system allows you to choose the search strategy which suits your objectives best: You may either search for topics or for specific terms in a free text search context, or you may aimlessly jump from one hit to the next one connected by its contents. The information system provides you with a hit list, it displays the number of hits (tables, diagrams, texts, definitions, other) and provides access to the respective information. For text search, a medical thesaurus may be used which is based on the ICD-10 diagnosis thesaurus. You may download all information found onto your own PC for subsequent processing and you may select the language of your search to be either German or English. 2.3 Development of the IS-GBE The Information System was created within the research project Development of a Federal Health Monitoring System. It was developed within 15 months and released in May A first technical update was released in May Preparations for the next update are being started at present. Besides the technical point of view, the system will also have to properly reflect changes which may occur in topics or priorities and shifts of the users foci of interest. In the near future, one of the main tasks will be to make the system more widely known and to enlarge the number of users. 2.4 Hardware and Software Technology The IS-GBE uses a relational database (RDBMS) to store and retrieve numerical and non-numerical information (Oracle 8i Server) and a multidimensional database system (MDBMS OLAP) to present numerical data as arrays or data cubes (Oracle Express 6.2). The latter contains all raw data in an aggregated form which is necessary to calculate indicator values; and it also performs aggregation steps. It is the prerequisite for a fast generation of ad hoc tables, which can be viewed from many different perspectives by changing row and column dimensions or choosing different sections of the data cubes. Many tables provide an option to determine the level of data details (drill-down). Results not required for a certain purpose may be hidden, while other relevant data may be shown as requested. Selection is vital considering that the largest available table (number of deaths by year, region, age, sex, nationality, and ICD) comprises three million data fields, not counting those with value zero. The system is accessed via web servers (Oracle Web Server 3.x). The software is implemented on Sun Ultra Sparc and Ultra Enterprise Servers. The operating system is SunOS.
11 The EU Health Monitoring Programme Hans Stein, Federal Ministry of Health, Bonn When I heard that Henriette Chamouillet of the European Commission was ill, I was sad for two reasons: Ω It is always bad news to hear that someone is ill. Ω I was being asked to step in, and I agreed to do so. Of course, I cannot speak for the Commission. I am in no way authorized to do so, and in many cases I have different views. But I will try my best to be fair and objective. On the whole, what I am going to say now will be very different to what Henriette would have said. In my statement I will not limit myself to the existing Health Monitoring Programme. I will, of course, speak about past developments and the present situation, but I will concentrate on the future prospective, and that means the new EU Health Programme. Health monitoring at EU level has a long history. It did not start with the Health Monitoring Programme and, hopefully, it will not end when the programme runs out at the end of the year Let me first say a few words about the past situation. In the past, health monitoring and health information at EU level had two components. Since the first EU health activities started with the programme Europe Against Cancer, based on article 129 of the Maastricht Treaty and later on article 152 of the Amsterdam Treaty, health information, as well as the exchange of health data, has been a component of EU activities. All existing programmes of the Community that is to say Cancer, Health Promotion, AIDS, Accidents, Rare Diseases include health reporting, health information and health monitoring as a priority. Because the Member States did not want the Commission to get involved in their health care systems, they accepted the exchange of data and information as an area where they considered the Community could do no harm. This prioritization of health information within every health programme can be considered positive, because it connected the exchange of data to policy action. The second component of past EU activities was quite independent of these disease-oriented programmes, namely the development of the socalled ENS European Nervous System in Led by the WHO in Copenhagen and funded by research money, a working party was set up under the leadership of Denmark. The result was a health data recommendation by the Council, and in 1994, the Health Monitoring Programme finally came into existence. At the same time, data exchange at EU level was organised and financed through the so-called IDA Programme, which is aimed at data exchange between the administrations of the Member States. This also led to two projects that still exist today, namely HIEMS and Euphin. In 1996, Eurostat, the EU statistical office, created LEG Health, a health working party comprising three different committees. They concentrated on health interview surveys on mortality, morbidity and health resources. This situation simply cried out for a new organisational frame. It was terribly complicated, not at all transparent, and it was not only difficult to understand, but nearly impossible to manage. After a long discussion phase in the conciliation procedure between the Council and the European Parliament, the Community Health Monitoring Programme was finally adopted on the 13th of June The main point of disagreement was the question of how to fund the programme the European Parliament wanted more money than Commission and Council could agree to finally the sum of 30.8 Million Euros, a rather small amount, was accepted. Even at that time the European Parliament had wanted to establish a European Health Monitoring Agency. The Member States and the Commission did not accept this, because they did not want a new European Community Administration. As a compromise, the objective of the programme to contribute to the institution of a Community Health Monitoring System was agreed on. 3.1 Objectives of the programme The programme had the following objectives: Ω To measure health status, its determinants and the trends therein throughout the Community; Ω To facilitate the planning, monitoring and evaluation of Community Programmes and actions; Ω To provide Member States with appropriate health information to make comparisons and support their national policies. In order to achieve these objectives the Programme of Community Action on Health Monitoring consisted of three pillars: Ω Pillar A deals with the institution of Community health indicators, including the selection of relevant information and data for exchange between Member States, the Commission and international organisations. It also deals with conceptual and methodological work related to the process of making the data comparable and with identifying and developing suitable indicators. Ω Pillar B deals with the development of a Community-wide network for the sharing and transferring of health data between Member States, the Commission and international organisations. Ω Pillar C deals with the development of methods and tools necessary for analysis and reporting, and the support of analyses and reporting on health status, trends and determinants and with the effect of policies on health. 3.2 Did the Health Monitoring Programme achieve these aims? I have to give an answer without waiting for the planned evaluation report. My answer is clear and simple: No. And the reason for this failure is that this kind of approach would have needed and still needs strong central management. It seems that the Commission Administration is not used to this kind of task. This type of management was missing right from the beginning. The programme was managed in the same way as all other action programmes are being run: They always start with a call for proposals. Proposals came in in large numbers and were subsequently evaluated by the Commission. The Programme Committee, its members being representatives of the Member States, either agreed or suggested changes. Finally, a number of projects were accepted. By this procedure a large number of interesting and good projects were financed. The entire list is presented in an annex of the interim report. But even if many of these projects were good, even excellent, the mere addition of more than 32 projects does not create a system. 3.3 What are the prospects for the future? As usual at EU level, an expert group, led by Professor Aromaa from Finland, was created. This group made suggestions and produced two reports, one in 1997 and another in In its first report in 1997 it listed four alternatives as to how health monitoring could be organised at EU level: Ω within the services of the Commission, Ω within Eurostat, Ω by the creation of a separate EU Health Monitoring Agency, Ω by tying existing national institutions into a network. In the 2002 report this was reduced to three different alternatives, namely Eurostat, a separate Agency or a network of Member States. The European Parliament is very much in favour of a separate Agency. As the Commission has been asked to establish these new structures in the future, there is a good chance that at least some parts of these Aromaa suggestions will be accomplished in the future. By the end of the year 2002 the Health Monitoring Programme will cease to exist. A new programme, the Community Action Programme on Health, will come into being. This programme consists of three different strands, one of which is Health Information. Therefore, there is a good
12 20 21 chance that the work done up to now will be continued. 3.4 Summary and conclusion The Health Monitoring Programme has not been able to establish a European Health Monitoring System. This task was clearly not achieved. Nevertheless, the programme cannot be considered a failure because it has not only produced a number of excellent activities, but it has also given everybody a lot of experience as to what can be achieved by European-level cooperation. It has shown where the limits of this cooperation are, and that greater centralization with a strong leadership is needed. It is now up to the new programme to establish this new EU System. It is my hope and I am convinced that this will happen that within two years we will have an organised European Health Monitoring System. 4 Differences in Health Reporting within the European Union: Challenges or Obstacles? Peter W. Achterberg, RIVM, Department for Public Health Forecasting, Bilthoven 4.1 Background and outline Much of what is presented in this article has been derived from the proceedings of a workshop on health reporting in the European Union that was held in Bilthoven in February 1999 (Achterberg & Kramers, 1999). Users and producers of health reports met there to discuss their experience with health reporting. The aims, purposes, key features, results and consequences of their national and regional health reports were discussed as well as factors considered as critical for the effectiveness of health reporting. The perspective of the European Union and its Health Monitoring Programme was the binding element of that meeting. After a short introduction, this paper will discuss the general principles and some key features of health reporting. These will be illustrated by some specific examples of reporting. The critical factors for an effective health reporting will be discussed next and the developments that may play a role in shaping health reporting in the future. Some final remarks will be made regarding the question of what current challenges and obstacles exist for health reporting on a European level. 4.2 Introducing health reporting: information process and key features Health reporting has been defined by Prof. Mans Rosén (1998) as: A system of different products and measures aiming at creating knowledge and awareness of important Public Health problems and their determinants (in different population groups) among policy-makers and others involved in organisations that can influence the health of the population. This definition reflects the important notion that health reporting is more than just a product, i.e. the actual health report, but that the underlying shared process of compiling and disseminating the information is also of the utmost importance. Figure 1 presents a schematic outline of the process of health reporting. In order to arrive at one of several reporting goals, i.e. a health policy report (priority assessment) or a health impact assessment, or a health monitoring report (using selected indicators) or a so-called topical health report (e.g. on one specific topic, such as smoking and health, or women s health ). According to this scheme, the reporting process involves: Ω The design of a conceptual framework of the area under study, including all relevant elements and their mutual relations. Ω Comparative and/or integrative analyses, i.e. Ω Comparative analyses between gender and age groups and/or overtime, and/or for special (risk) groups Ω Integrative analyses provide additional comparative value and ask specific questions, such as how much of a certain health risk is attributable to a certain risk factor, or how much of the total burden of disease is taken up by a specific disease. Integrative analyses can thus be vertical, i.e. comparing risk factors with regard to their contribution to mortality or morbidity (effects), or comparing diseases with regard to their share of the total health care costs (impact). Horizontal integrative comparison consists e.g. in a comparison of numbers of people carrying certain risk factors or diseases or comparing the burden of disease for some disease groups. Ω Prospective (future-oriented) or evaluative (retrospective) analyses. These will provide specific policy relevance. Prospective analyses can be made in several different ways, such as demographic
13 22 23 Figure 1 Data processing and analysis for policy-oriented health reporting Comparative Analysis (retrospective) Evaluations health impact assessments Conceptual Framework & Definition Data & Information Gathering health indicator monitoring topical health status assessments Integrative Analysis (prospective) Forecasts health policy priority assessments Health Status Assessments & Reporting Table 1 Key features of health reports Feature Policy-oriented Conceptual Integrative Collaborative Quantitative Consistent Prospective Evaluative Comparative Comprehensive Health Policy Formulation Description Clear central question for health policy support Start conceptually, not just from available data Interrelate health, determinants, care and costs Based on expert opinions; broad acceptance Whenever possible, based on data and research Uniform handling of data (maximum comparability) Looking towards the future (trend, scenario, model) Relating past policy to current trends Regional, international differences, special groups Health is a broad issue; many data are relevant projections, mathematical modeling, or scenarios. The process of preparing a national or regional health report can also be characterized by a set of key features (Table 1), which are, implicitly, also present in Figure 1. A comparison of health reports from EU countries will reveal many differences. On closer observation, these differences can mostly be traced back to different aims and purposes of the reports. Their policy relevance may differ, but also their comprehensiveness. Health is a broad issue and a full picture requires attention to be given to multiple issues, e.g.: infectious and chronic diseases, accidents, mental health, quality of life, handicaps and burden of disease. Attention to health determinants is essential as well, especially regarding policy relevance. This requires a focus on biological and genetic factors, as well as on the environment, on socio-economic factors, on lifestyle and health behavioural factors, on disease prevention, health education, and health protection. Attention to social inequalities, regional differences and specific groups, such as children, women, elderly people or ethnic minorities may be relevant as well. Next, the utilization, resources, costs and quality of health care are important both as a determinant of health and as a consequence of ill health. A complete picture of a national health system will require looking into health issues in other policies as well. Reporting on this very complex area of public health and health care can be tackled by an explicit or implicit conceptual approach. The comprehensiveness of a report and the conceptual approach taken will depend, however, on the question(s) to be answered, i.e. the aims and purposes of the report. In addition, the character of health reports may vary from fully descriptive (e.g. statistical) or indicator-driven to fully integrative, i.e. relating health to its causes and consequences and pointing at policy implications. Differences in the use of time trends and of other ways of looking into the future (demographic projections, scenarios, and mathematical models) determine the extent to which reports are prospective. The consistency in treating the various subjects may differ between reports. Being quantitative is generally important, but depends on aims and purpose. Whether and how national or international experts were involved in drawing up the report (being collaborative) is also a matter of importance, but this may vary as well. Although many differences in reporting were noted, these differences do not imply, however, that a particular report is better than another one. Still, these differences open the possibility to learn from each other and arrive at a closer match between the demand of the policy maker and the supply by the public health information expert. It may therefore be of value for EU member states to try and identify best practice in health reporting in the European Union in order to enable learning from each other s earlier experiences. For this purpose, a project has been started, funded under the European Commission s Health Monitoring Programme and led by the LÖGD North-Rhine Westphalia (see Brand et al., in this volume). In this project the Dutch National Institute for Public Health and the Environment (RIVM: Peter Achterberg) and WHO Copenhagen (Arun Nanda, regional advisor) participate as well. Among other things, the key features from Table 1 need to be operationalized and expanded, where possible. 4.3 Examples of health reports Before we address the question of how to steer and measure the effects, effectiveness and actual impact of health reporting, we shall begin with briefly discussing three examples of very different health reports with their specific characteristics. Example 1 Dutch Public Health Status and Forecasts: Conceptual approach Figure 2 presents that part of the Dutch conceptual model for public health that focuses on health policy and determinants of health. It clearly points out that health policy focuses on several areas of prevention (disease prevention, health promotion and health protection), which in turn are related to different risk factors. Health promotion for instance relates to lifestyle factors and health protection deals with the environment. All these factors contribute to health or ill health through various
14 24 25 Figure 2 Model for Health Policy and Determinants of Health Figure 3 Trends in life expectancy in women in Denmark and the Netherlands within the perspective of the European Union Health Policy Determinants Health Care and Prevention Health Care (somatic) Prevention Health Protection Disease Prevention Health Promotion Health Care (mental) Life expectancy (years) Exogenous determinants Netherlands Denmark France Spain Sweden EU 15 Physical environment Lifestyle Social environment Greece Genetic Endogenous determinants Health Status Acquired mechanisms. One major approach consists in influencing, or interacting with, hereditary and biological factors (i.e. blood pressure, cholesterol levels). If policy wants to influence blood pressure, it can do so by trying to influence lifestyle (nutrition, physical activity) or through the health care sector (stimulating improving standards for blood pressure screening and treatment). The full model itself is more elaborate (not shown), as below the determinants of the health status area is developed (not shown) and below that, health care appears again, but this time its use and costs. Besides showing the intervention lines in health policy, the model helps in organising the chapters and topics in a health report and provides a basis for mathematical modelling exercises. Example 2 Lifetime in Denmark: Answering a central question The report Lifetime in Denmark (1994) took a clear conceptual approach and followed an analytical path. It departed from the observation that life expectancy in Denmark did not increase as quickly as in most other EU countries. It has performed a comparative and integrative analysis by looking at major causes of death contributing to differences in life expectancy figures in Nordic countries (by age and gender) and then looked at the determinants of these causes of death. Life style factors (especially smoking, and alcohol abuse as well) were identified as major causes of the stagnating life expectancy in Danish women. It appeared that Danish women had been taking up male bad life style factors earlier than in many other European countries. Clear recommendations for policy makers (prevention!!) have been made. Recently, the development of female life expectancy in the Netherlands shows a tendency similar to that in Denmark (Figure 3) and it has been shown (Achterberg et al., 2002) that the underlying causes may be similar to the Danish ones. Example 3 John Graunt s Bills of Mortality : Early aspects of modern health reporting In London, John Graunt composed in 1662 what in later times might have been qualified as a policy report in which public health is the central element. Box 1 contains several of his observations. We conclude from looking at John Graunt s Bills of Mortality (published in 1662, see Box 1) that this report was already policy-relevant as it was dedicated to a Privie Council of the King, who was, of course, a policy maker. The report was comprehensive, quantitative and comparative as it described trends in patterns of disease and mortality, demographics and migration, environmental problems (city air pollution), social inequalities (beggars), it made regional comparisons (suburbs of London) as well as international comparisons. John Graunt also paid attention to, and made recommendations for, a better data collection. He noticed problems in registration of causes of death and recommended a regular collection of data (on births, deaths) and the use of clear definitions (infants). Many of these issues are still on the public health agenda. The main point the reports discussed at the Bilthoven workshop had in common was the fact that they at least contained factual information on health status (mortality, morbidity). Another type of health reports has recently appeared in Europe as well. We mean the target or goal-oriented public health reports that mainly contain national strategies and priorities or targets for action in public
15 26 27 Selected observations from John Graunt s Bills of Mortality (1662) International comparisons Ω That in Holland, although nowhere fewer beggars appear to charm up comiseration in the credulous, yet nowhere is there greater, or more frequent Charity: onely indeed the Magistrate is both the Beggar, and the disposer of what is gotten by begging; so as all Givers have a moral certainty, that their Charity shall be well applied. Ω That but few are murdered, viz. not above 86 of 22950, which have died of other diseases and casualties; whereas in Paris few nights scape with their Tragedie. Patterns of disease and mortality Ω That the Rickets is a new disease, both as to name and thing; from fourteen dying thereof, Anno 1634, it hath gradually increased to above five hundred Anno health and health care. The Health for All strategy by WHO provided the initial inspiration for this type of reports. The well-known Healthy People reports from the USA and Health of the Nation reports from the UK are other examples of that approach. Recently, Denmark (Danish Ministry of Health, 2000), Sweden (Swedish National Committee for Public Health, 2001) and Italy (WHO/ ECEH, 1999) have also published goal-oriented public health reports and Germany has a target-oriented public health approach under preparation (GVG, 2000). The framework of analysis that we present in this paper does not apply to these reports. 4.4 Critical factors for effective health reporting The final impact of any health report is determined by its effectivity in getting its messages across to policy makers and other actors and agents in the Ω That the Stone decreases, and is wearing away. Ω That not one women in an hundred dies in Child-bed, nor one of two hundred in her Labour. Ω That purples, Small-Pox, and other malignant Diseases fore-run the Plague. Ω That two parts of nine die of Acute [22 %], and seventy of two hundred twenty nine of Chronical Diseases [54 %] and four of two hundred twenty nine of outward Griefs [24%]. Other observations Ω That every Wedding one with another produces four Children. Ω That London is not so healthfull now as heretofore. It is doubted whether encrease of People, or the burning of Sea-coal were the cause, or both. Ω That Physicians have two Women patients to one Man, and yet more Men die then Women. health policy area. Critical factors for effective health reporting were defined by Aromaa (1998) as: Ω the ability to provide a relevant answer to a specific policy question; Ω acceptance of the consequences (by end users and by the public health field); and Ω the intrinsic quality of the reporting effort The question is how to actually determine this effectiveness. Some examples of how to measure the actual effects and impact of a health report have been given by Rosén (1998): Ω Statements in government policy documents or in regional and local political fora Ω Political initiatives (government bill, commission installed, parliamentary motion proposed) Ω Administrative changes; changes in allocation of resources Ω Research programme initiatives Ω Use for (higher) education (university course) Ω Coverage in mass media Ω Citation in scientific articles Ω Recognition among decision-makers In some countries, reporting efforts are therefore linked to evaluations that try to uncover whether any of such effects of the reports could be found and whether the critical factors had been met. 4.5 Evolution behind health reporting When policy-relevance is taken as the central issue of health reporting, it is logical that health reporting needs to follow shifts in political attention. This attention in turn is based on developments in the area of health and epidemiology, but also on the political-economic arena. Several phenomena are relevant to these aspects: Ω Epidemiological transition Ω Shifting of political attention towards health care Ω Globalisation, open borders, growing importance of the EU Ω From Public Health plus Health Care to Health Systems The participants in the international workshop on health reporting at the RIVM noted the following trends from their national perspectives: Ω A growing attention for health care Ω Policy makers want to know about variations in needs, use, quality, costs, effectiveness of health care and prevention Ω An increased awareness of effects of other policies on health Ω Health Impact Assessment is on the political agenda. Ω More attention for international comparison Ω Better perspective and understanding of the national situation, bench-marking and exchange of best practices have become of interest for policy makers Ω More interest in exchanging views with international peers Ω The Berlin conference, where this paper has been presented, was a good example of this increased interest in an exchange of views on health reporting. At ministerial levels, a tendency towards looking for international benchmarking and health system performance comparisons has been observed. Ω A growing use of new information technology (WWW) Ω New technologies offer better possibilities for user-friendly provision of flexible and up-todate information for a variety of audiences, including policy-makers. 4.6 Differences in health reporting: Challenges or obstacles? The practice of health reporting in Member States of the European Union clearly varies, although reporting generally takes place within some common dimensions (key features), as discussed above. Health reports are prepared in response to a more or less specific question from policy makers. Depending on the question, the answers will vary. On the one hand, these different reporting practices provide opportunities to learn from each other and improve our efforts and effectivity. On the other hand, however, different reporting practices occasionally provide some obstacles to comparison and benchmarking. The process of common indicator definition as organised by WHO, OECD and Eurostat is essential for harmonizing our efforts and improving the comparability of our data. Challenges Ω Use of New Information Technology Ω Commitment to: international data delivery, data harmonization, and indicator development Ω Making the best information and service available to policy makers Obstacles Ω Everybody wants to harmonize, nobody wants to get harmonized
16 28 29 Ω Little collaboration between international organisations Ω EU: Lack of vision (European Commission) and commitment (Member States) The challenges for health reporting in Europe consist in finding ways to improve and optimize the use of new information technologies for information sharing and health reporting to serve policy makers in an optimal fashion. This requires, among others, an increased commitment by countries to deliver their data to international bodies and to participate in activities regarding data harmonization and indicator development. Policy makers should take a facilitating role in this issue. The obstacles for a broader, more policy-oriented kind of health reporting are the resistance to harmonization by individual countries and the lack of co-operation among the international organisations in the past. From the EU perspective, the lack of a clear vision by the European Commission on the future of health information has been an inhibiting factor and simultaneously, the lack of commitment by the member states to supply and harmonise the data collected by them. Again, policy makers should be aware of the need for their proactive stance in the health information area: There will be no benchmarking without a good basis provided by national data. References Achterberg PW, Kramers PGN (1998). Health Reporting in the European Union. Summary and Proceedings of a Workshop organised by the RIVM in Bilthoven on 19 & 20 February, RIVM-report , Bilthoven Achterberg PW, Kramers PGN, Van der Wilk EA (2002). AHealthy Judgement? Health and Health Care in the Netherlands in international perspective. RIVM report , Bilthoven Danish Ministry for Health (2000). The Danish Government Programme on Public Health and Health Promotion An action oriented programme for healthier settings in everyday life. Copenhagen Graunt, J (1662). Natural and Political OBSERVATIONS Mentioned in a following Index, and made upon the Bills of Mortality By JOHN GRAUNT citizen of LON- DON with reference to the Government, Religion, Trade, Growth, Ayre, Diseases, and the several Changes of the said CITY, London. [http://www.ac.wwu.edu/ ~stephan/graunt] GVG (2001). Gesundheitsziele für Deutschland: Entwicklung, Ausrichtung, Konzepte. GVG Vol. 37, Cologne. [www.gesundheitsziele.de] Lifetime in Denmark (1994). Second report from the Life Expectancy Committee of the Ministry of Health, Denmark, Statens Information, Copenhagen Ruwaard D, Kramers PGN (1998). Health, prevention and health care in the Netherlands until Public Health Status and Forecasts Elsevier/DeTijdstroom, RIVM. [www.rivm.nl/index_en.html] Swedish National Committe for Public Health. Health on equal terms national goals for public health (2001). Scand J Public Health 2001: Suppl. 57 WHO/ECEH, Ministry of Health (1999). Health in Italy in the 21st century. Part II. The way foreward. Rome 5 Do Health Reports Meet the Information Needs of their Users? Hans Stein, Federal Ministry of Health, Bonn Looking at the present state of health monitoring or health reporting in the European Union as a whole and in the different Member States and comparing this present situation with the past, we have every reason to be satisfied with what has been achieved in the last few years. We have reason to look to the future with optimism. Health reporting seems to have been generally accepted as an instrument of public health. Permanent structures are about to establish even at EUlevel personal and financial resources although we always say that there is a need for more money. A lot has been achieved in the past years, but we should be aware very much of not becoming complacent. There still remains a lot to be achieved and one of the big open questions is the one you have asked me to comment on: Does health reporting meet the information needs of the users? These are, in particular, the politicians, health care professionals and citizens. Or to put it more bluntly: Has health reporting had a real impact on health policy in the past? Have health politicians and decision-makers discovered health reporting as an instrument that could help them to solve their problems? Do these decisionmakers make sufficient use of health reporting and if not, whose fault is it and what could be done to improve this situation? Health reporting is not an aim in itself. Although I sometimes feel that this kind of thinking exists and that some health reporters feel quite happy and comfortable in their ivory tower. Health reporting has the task to contribute to evidencebased health policy. The European Union Health Monitoring Programme, established in 1997, describes the objectives of health monitoring or health reporting as follows: Ω To measure health status, its determinants and trends throughout the Community; Ω To facilitate the planning, monitoring and evaluation of Community Programmes and actions; and, most important Ω To provide Member States with appropriate health information to make comparisons and to support their national health policies. The very first health report of the German Government, the 1970 Gesundheitsbericht described these tasks as follows: In order to be successful, health policy and health law-making need, today more than ever, scientifically sound facts and data. I think this is still true and forgive me for citing this because this report was my very first task in the German Health Ministry, when I started my work there in Has health reporting achieved these aims? Is health reporting really having an impact on health policy and health decision making in the European Union as a whole, in the Member States or even at regional or local level? My answer regarding the present situation is simple and short: Health reporting has not yet achieved these aims. It has managed to provide a tremendous amount of information, more information than has ever been available before. However, on the whole the potential of health reporting has not been made use of sufficiently. My purpose for being so blunt is not to put the blame on anybody be they users or providers of health reporting. My task is to look into the reasons for this situation and to suggest ways and means of improving the situation. This critical appraisal of the present situation is not the result of a survey, of a serious scientific evaluation. Therefore my first suggestion for improvement would be to stress the need to undertake an evaluation as to who is making use of health reporting, to what purpose and to what degree of success. I do not know whether studies of this kind exist in other Member States, but I do know that in the European Union such a survey, such an internal evaluation does not exist, and I am quite sure that the ongoing evaluation of the EU Health Monitoring Programme will not provide that information.
17 30 31 As to the German health reporting system, a users analysis has been made for the German Federal Health Report published in With 3576 copies so far it has been widely distributed. On more than 500 pages, a hundred health-related topics are presented in very condensed form, aiming to provide a reliable data base for rational, subjectrelated health policy discussions and decisions. Little was known about the readers and even less about how its form and content appealed to them and what their expectations were regarding future reporting. Thus a short questionnaire was enclosed with each report to collect initial information about the readers, their professional and institutional background and suggestions of topics for the future. An acceptable return of 433 questionnaires allowed some basic conclusions. As to the users of the health reports in Germany, the analysis has provided us with the following information: Ω 27 % of the users perform management tasks in health care; Ω 24 % work in health related research; Ω 28 % belong to the medical professions; Ω 5% work for the media. As to the institutional background, the analysis has shown that: Ω 30,5 % work in research institutions; Ω 27,9 % work for private enterprises; Ω 10,9 % work for hospitals; and Ω 6,9 % work for associations. I do not want to go through the whole list, but for me the most impressive result was that this survey shows that only 1,6 % work in and for health policy. And this figure should really make us think. No matter how interesting such a survey of users may be, it says very little as to the purpose the users needed the health report for and whether their purpose could be achieved by the report. I believe that future evaluations of health reports should provide this kind of information. As I have stated before, it is the main purpose of health reporting to provide answers to specific, policy-relevant questions. Has health reporting been able to provide these answers? Have policy and decision makers asked the relevant questions? The answers to these two questions are most relevant for future work on health reporting. Health reporting will only have a sufficient impact on policy if it succeeds in providing relevant answers to specific policy questions and if these answers are accepted by the end user, be it government or parliament. To have an impact in health policy, health reports have to be effectively used by policy makers. Has this happened in the past? Is there a way of evaluating this? The effectiveness of health reports can be measured in various ways. Of course, a possible outcome in terms of health changes would be the best measure to assess an impact, but can positive changes in health status be attributed to a health report? Therefore, actions that are initiated by a health report, for example policy changes, could be considered as a sufficiently relevant effect. And of course one has to differentiate between the official impact, that is to say recognized effects on governmental policy, resulting in political, legal and administrative changes and the unofficial impact, such as publicity, scientific impact, use for educational purposes, influence on political parties or pressure groups. Again, the answers to these questions can only be provided by a survey or even a research undertaking. As an answer to these questions on the basis of personal experience, I would say that the official impact, that is to say recognised effects on government policy have been very limited and small, whereas the unofficial impact, such as publicity etc. has been quite large. To give an example at European level: We are about to develop a new public health strategy. The Commission has published a communication on its new strategy a year ago. I do not think that this strategy was influenced by the health status report of the Commission As we all know, a new health status report is on the way and it would be interesting to see whether it will have influences in that direction. And if I think of the German situation, I do not know of any major policy decision, be it on the federal or state level, that has really been influenced by a health report. What are the reasons for this situation? Policy is influenced by all kinds of factors that on the whole have little to do with reported results on health issues. Some of these determinants are the need to solve pressing problems quickly, to satisfy voters, and finally, to win the next election. It is difficult to see how health reporting could get into this circle. Nevertheless, health reporters should recognise these political needs and try to satisfy them. I believe this could be done in two different ways. Firstly, by assisting the preparation of new health policies or new health legislation by proposing new priorities including the need and ability to identify health threats, and secondly, by analysing and evaluating the current and past health policy activities, the effects of legislation, etc. As health reporting must go beyond the presentation of sets of statistical data, it should not only offer explanations for observed differences and trends, it should go a step further and try to suggest new scenarios and models. Of course, the most successful way of increasing the policy impact and policy relevance of health reporting would be the institution of firmly structured links between health reporting on the one hand and health policy on the other. Ideally, health reporting should become a firm part of a health policy cycle. I believe that this kind of a cycle exists in some Member States, the Netherlands for example, where health reporting is not left to itself but it is implemented according to an overall health policy plan and guided by explicit policy-oriented objectives and central questions. In Germany, for example, health reporting could be linked more firmly to the work of the Sachverständigenrat der Konzertierten Aktion (Council of Experts for Concerted Action). This might mean, that health reporting loses some of its independence, but it would more certainly gain by having more impact. To give you a few examples as to how health reporting could be better integrated into some important policy tasks, mainly at EU level: Ω Health reporting could be embedded in the health impact analysis of other policies, e. g. one could pass legislation stating that no policy or law could be passed without this health impact analysis having been made. Ω Health reporting could lead to health targets at the EU level; as far as I know this is already the case in some countries where targets have been established, making use of health reporting to a great extent. Ω Health reporting could become part of the new EU method of open co-ordination as described in a white paper of the Commission on European Governance dated 25 July As this method is largely based on the setting up and measuring of indicators and benchmarks, this would be an ideal area for transforming health reporting at European level into a policy instrument. Ω And finally, the most direct way of giving the health report a weight of its own would be to transform it into an official governmental or Commission policy document and to discuss the health report in Parliament. As to the EU this would mean that the next Health Status Report would be discussed and commented upon in the Health Council and the European Parliament. These have been just a few thoughts on how the impact of health reporting could be improved. I hope that these short remarks have given you some substance for the further debate. Thank you for your attention.
18 Health Information Sources and Data Collection in Estonia Ain Aaviksoo, Ene Palo, Ministry of Social Affairs, Tallinn To start this presentation I must admit that whatever description about Estonia is given, one must know that the country is constantly changing at a very rapid pace. So I will start by describing the present state of general health care organisation in Estonia. In 1992, soon after regaining our independence, the Soviet state medical system was replaced by a uniform health insurance system financed through taxation. Today, its coverage reaches about 95 % of the population (1.4 million). The primary health care system was the first to undergo structural reforms. Today we have almost 800 fully trained and equipped family doctors all across the country. So this process has already been more or less finalized. At the moment, a new National Board of Health (NBH) under the responsibility of the Ministry of Social Affairs is being organized. It will be responsible for licensing and quality control of health care services, both among service providers and medical professionals. NBH shall be operational from 1 January Other initiatives are also underway that are relevant to the collection of information. First of all, the Government has adopted a Hospital Master Plan according to which the total number of active care hospitals will be reduced from 70 at present to 13 plus a few monofunctional (mental care) hospitals. The plan has been drawn up for the years but the process has started already. Part of the to-be-closed hospitals will become just administratively merged (this is the case in the capital, Tallinn), the others will be reorganized from active care hospitals to become hospitals for long-term care and nursing. So all in all, the total number of beds shall remain the same or even increase a little but the profile of almost one half of the beds shall change. Last but not least, changes in the principle of payment have been adopted by the Health Insurance Fund, from fees for specific services to diseaserelated groups and also, the development of nationwide public health services has started. The key players in the field of health information are the following. First, there is the Ministry of Social Affairs (MoSA). For the ministry, health issues are just one out of three vast areas, i.e. health, labour and social affairs. The Bureau of Medical Statistics is an integral part of the ministry, whereas Health Protection Inspectorate, Board of Medicines and Board of Health are separate institutions under the responsibility of the Ministry of Social Affairs. Estonian medical registries are financed and owned by the Ministry of Social Affairs, but the Institute of Experimental and Clinical Medicine also an institution that is directly subordinated to the MoSA, runs them. Quite a bit of information is available to the Health Insurance Fund. The main source of additional and background information is the State Statistical Office, and there are a number of research institutions that carry out surveys. Three types of information are used to describe and analyze the health situation in Estonia. Statistical reports from health care providers are the main source, there are also a few medical and administrative registers and some surveys. The Health Care Organisation Act that was adopted in 1994 provides a legal basis for the collection of health information. Yet a new version of the Act that will replace the old one is being currently considered by the Estonian parliament. In 1995, the Public Health Act was adopted, but practically each year it has been amended. Based on these fundamental acts of parliament, both the Government and the Minister for Social Affairs have issued a series of regulations that define the responsibilities of different institutions and the data flow system in more detail. It is not less important that Estonia has passed the Personal Data Protection Act in 1996, and I must admit that it really works, sometimes even too well. The main health information is received through statistical reporting by health care providers. It is based on the old Soviet system which has been very comprehensive, but it has two principal weaknesses: it is too costly and quality control is poor. For these reasons, the system of reporting is undergoing rapid changes to optimize the system, to improve the legal framework, in order to meet modern financial, but also data protection and, last but not least, public health needs. All in all there are 25 different reports that health care providers have to complete. The reports describe the situation concerning medical conditions and diseases (incidence), the amount and structure of services and also the working of hospitals as well as financial data. The data flow is rather simple as Estonia is very small country. All health care providers (approximately 1000) have to complete and send the reports to the local county physicians (15) where single data files are aggregated and already computerized files of reports are compiled. The final data processing takes place in the Medical Statistics Bureau, which is also responsible for disseminating the data in different forms. MSB compiles aggregated reports for publication in printed form and on their website. MSB provides the State Statistical Office with a number of reports that are agreed on annually. MSB is also the focal point and official source of national health information for different stakeholders, including international organizations. There are some other sources of national health-related information that MSB share with the relevant authorities. One is the State Statistical Office (subordinate to the Ministry of Internal Affairs) that collects information on basic socio-economic and demographic indicators and causes of death. The Health Protection Inspectorate is responsible for communicable diseases and vaccination so they have the most appropriate data about these fields. From 2002, the Board of Medicines and the Board of Health will also be responsible for collection and analysis of information on their fields as described earlier. Medical registries: There are only a few of them in Estonia. And here I am talking only about the ones that the state pays for and is responsible for by law. The oldest and the best is the Estonian Cancer Registry, which has collected data since 1968 and is highly evaluated and accepted on an international level. During the 1990s, two more registries have been established, the Medical Birth Registry and the Abortion Registry. These have been functioning with satisfactory results despite the difficult financial situation. Of quite recent date are new databases on tuberculosis, drug-addiction treatment and blood donors. Initially, data have been used for reporting. As funding sets very strict limits for the activities of professionals, there are no more official medical registries in Estonia, although many others have been considered necessary. To name just a few, there is a need for registries on injury, hypertension, hospital discharge and (why not) for diabetes, orthopaedic allografts etc. The database of the Health Insurance Fund can also be considered as a most valuable data source, and as the Fund is a public enterprise, it is possible to obtain data for statistical use from there. Besides, there are administrative databases for physicians and health care providers and soon there will be a database on nurses as well. Surveys have increasingly become irreplaceable tools for health reporting. Estonia has several regular surveys that have proved their efficiency and satisfactory credibility. The Estonian Health Interview Survey (1996) is considered the best for its good sample size (5000) and comprehensive set of questions. However, due to the high cost involved, it has not been conducted very often. In our opinion, the second rank should be given to the NOR- BALT Survey (1994 & 1999) that was carried out in all Baltic States, together with our Nordic colleagues and with a good sample size. It was quite socio-economically oriented and is therefore a valuable tool if linked with other surveys or data-sources. FIN- BALT is a survey that has been conducted every other year since It was developed for the Baltic States together with Finnish colleagues. It is the study most often referred to and it provides very good trend lines. Its weakest point is its small sample size (2000). Surveys of smaller size and covering different age groups have also been done, but they have usually remained once-off events. Nevertheless, health surveys shall be the subject of intensive development and constitute a very important tool for Estonian health reporting in the future. As to future developments, I shall just name some key words to give you an idea about what is the mainstream in the Estonian health information system. First, a new National Health Development Institute shall be established in It will be the first real public health institute in Estonia and its main task in the field shall be a series of studies on the quality of present health information. Then, by the end of 2001, a long awaited study, Inequalities in Health in Estonia shall be ready and this will cre-
19 34 35 ate a basis for a new equity-based health strategy. A new system for health reporting will be developed, along with some new registries, e.g. on communicable diseases, injuries and hospital discharge. And last but not least we hope to introduce a large-scale regular national health survey from From a technical point of view, Estonia continues to be one of the leading e-countries. Thus, our Health Care Project 2015 is very intensively developing an electronic case history and an electronic health record that should be uniformly operational by And all in all, a national health information network or system is to be created, but at this point I will leave you without explanation, as the latter project has not yet been defined beyond this slogan. 7 The National Health Reporting System in the Czech Republic Miloslava Chudobová, Marie Jechová, Institute of Health Information and Statistics of the Czech Republic, Prague Until 1950, the only statistical data compiled systematically in this country were demography statistics. In morbidity statistics, the occurrence of highly infectious diseases was primarily observed. Social insurance bureaus recorded and processed data on past cases of incapacity to work. The statistics referring to hospitalized patients were processed in hospitals and medical centres. In 1952, the Centre for Health Statistics was established as a section of the Ministry of Health. At the end of the fifties, annual forms to be returned by health institutions were introduced, the processing of which was an important tool for analyzing the activities of health institutions and health personnel. In 1960, this section of the Ministry of Health was transformed into an independent organization with a budget of its own, the Institute of Health Information and Statistics of the Czech Republic (IHIS CR). From the beginning, the Institute had been commissioned with obtaining and processing statistical data on the state of health of the population and the activity of health institutions. In December 1990, the Czech government approved the proposal to establish a new health care system. The main issues which influenced the changes in the information system were as follows: Thus, demonopolization, decentralization and liberalization became the key elements of the reform of the Czech health system. In 1990 and 1991, as a part of the great changes in society in general, a dramatic liberalization of the health care system took place. The principle of a free choice of health care facilities was introduced. After new laws had been passed, the health care system moved toward compulsory social and health insurance models. AGeneral Health Insurance Company was established. At present, health insurance is the main source of financing of health services, with a share of slightly above 80 %, taxes supply a bit over 10 % to cover investment and non-investment expenditure in both, state and local government budgets. Other sources are only of minor importance. In 1990, there were 5,500 health institutions organized as parts of 142 major and economically independent corporate bodies. They represented two large groups: Ω Institutions controlled by regional and district health offices (93 offices), which guaranteed health care for their respective territories and Ω Institutions directly controlled by the Ministry of Health. Ω Health services will continue to be publicly funded, but there will be a diversity of providers; Ω A basic element of public health care was to be formed by autonomous health care providers independent of the district institutes of national health; Ω Curative care was to concentrate particularly on primary care and on ambulatory care in general; Ω The health care system was to derive its financial means from different sources (health insurance funds, national budget, local budgets, companies, citizens, etc.); and Ω A mandatory health insurance system was to form a fundamental part of the health care system. At the end of 1990, the regional health corporations were abolished and those institutions came under the direct control of the Ministry of Health. Decentralization of district health corporations started in In April 1992, the Act on Healthcare in Non- State Institutions was passed. This Act meant the beginning of the process of privatization of the health system in the Czech Republic. Within a few years, the number of economically independent health care institutions increased considerably, from 142 (or 5,500) to 25,000 units. This process was practically finished by the end of Since that time, only small corrections have been made. Most of the new units are independent centres of primary care: general practitioners (GP), GP for
20 36 37 children, stomatologists, gynaecologists and specialists in out-patient care. It is not possible to develop the new system of health care without exact and timely information on the state of health of the population, lifestyle, living and working conditions, the network of health care institutions and their activities, and on manpower and the health system s economy. The National Health Information System (NHIS) was created to provide the requisite information. The concept of the NHIS was approved in The NHIS is a nationwide information system regularly collecting and processing data from all spheres of the health care system. The NHIS also uses data from the information systems of other government sectors and of the Czech Statistical Office (CSO). The NHIS remains an open system which reacts to suggestions. Work on the development and perfection of the NHIS should never be declared complete. The National Health Information System fulfils the following tasks: Ω Collecting data, above all from health institutes Ω Providing the information base for government administration and health policy Ω Analyzing the state of health of the population Ω Complying with requests from international bodies (WHO, OECD, EU). Elements of the NHIS: Ω Health conditions among the population including demography Ω The network of health institutions and their activities Ω Manpower Ω Health care economy Ω Information from other sources (CSO, other sectors) Sources of information used: Ω Institute of Health Information and Statistics of the CR Ω Health registries Ω Mandatory notifications (reports on individual cases) Ω Mandatory forms Ω Surveys Ω Czech Statistical Office and other Government Sectors Ω International bodies Health registries: Ω Czech Cancer Registry Ω Tuberculosis Registry Ω Registry of Cardiovascular Interventions Ω Registry of Cases of Occupational Disease Administrative registries: Ω Registry of Physicians and Pharmacists Ω Registry of Health Institutions Mandatory notifications: Ω In this way, data are collected above all on the state of health of the population Ω when it is necessary to collect case-related data with the possibility of tracing them back to one person (infectious diseases, source of infection etc.), Ω when collection of aggregate data is ineffective (hospitalization). This limits the diversity of processing of data and is a burden for the reporting units. Individual mandatory notifications: Ω Infectious and parasitic diseases Ω Venereal diseases Ω Abortions Ω Hospitalization Ω Suicides Ω Mother and newborn Ω Deaths among pregnant women Ω Congenital anomalies Ω Incapacity to work due to disease or injury Ω Psychiatric care Regular mandatory forms: Ω On out-patient health care institutions and their activities Ω On inpatient health care Ω On the economy of health institutions Ω On manpower and wages Ω General forms Ω Other forms (public health service, medical apparatus, etc.) Forms on activities of out-patient departments by specialization: Ω Manpower of departments Ω Activities of departments Ω Follow-up care (by selected diagnoses) Ω Special items according to requests by the General Medical Council Surveys: Ω Health Interview Survey (HIS CR) Ω Special questionnaire built on internationally harmonized instruments Ω Health status of respondents observed (according to WHO definition of health) together with the patients self-estimation of his/her own state of health Ω Dental care Both surveys are repeated every three years. The Health Interview Survey includes evaluation of state of health (chronic diseases, social health, perceived health, lifestyle, smoking, alcohol consumption, body mass index, nutrition, physical activity). The NHIS is administered by the Institute of Health Information and Statistics of the Czech Republic (IHIS CR), established in 1960, which has been processing detailed data from various branches of health care over long periods. It has been responsible for methods of collection, processing and protection of data. Its main aim is to prepare data for government, research, public information, analysis of statistical data, publication of the main results, and to provide information to international bodies (WHO, OECD, IARC, EURO-TB). From 1993 until 1999, its units were subdivided by districts and regions. Since 2000, it consists of the central headquarters and 14 regional units according to the new territorial structure of the CR. One of the most important tasks is the protection of personal data. This is a consequence of the rapid development of automatic data processing. In 1995, the European Parliament recommended more stringency in the protection of personal data. It has been the aim of the corresponding directive to ensure both privacy and data flow. This is somewhat contradictory unless privacy is ensured in a way that allows research based on individual data. Personal data must be processed fairly and lawfully. Personal health data can be processed for purposes of preventive medicine, medical diagnosis, the provision of care or treatment or the management of health services, and where such data are processed by health professionals subject to national law or rules established by competent national bodies with the obligation to observe professional secrecy, or by another person also subject to an equivalent obligation of secrecy. Organizations handling personal data are obliged to observe special and strict regulations. IHIS CR today has a lot of international contacts. Up until 1990, international contacts were mostly limited to contacts with East European countries and sporadic contacts with the WHO which were conducted via the WHO centre in Moscow. Since then, however, the international activities have multiplied. Current international co-operation: Ω WHO Ω Database: WHO Health for All Ω OECD Ω Database: OECD Health Data Ω EUROSTAT Ω Other international activities (IARC, IACR, ENCR, EURO-TB and others) IHIS CR collaborates with the WHO on its projects. The main projects are Health for All and the Health Service Indicators Programme. In these projects, IHIS CR takes active part in the preparation of definitions and databases of basic health service indicators. The rapid development of information technologies contributes to an efficient use of new methods of data processing. It has enabled a prompt data flow. A high level of protection of personal data has been developed continually, in accordance with legislation. New technologies have provided new forms of data output. The IHIS CR annually issues comprehensive publications presenting a broad outline of the characteristics of health care statistical data. In addition, the series Health Statistics describes in detail certain selected sections of health care. All