),1$/5(3257'HFHPEHU±0DUFK. Joan G.M. Deckers François G. Schellevis - PDF

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+($/7+,1)250$7,21)52035,0$5 &$5( ),1$/5(3257'HFHPEHU±0DUFK Joan G.M. Deckers François G. Schellevis Project title: Project number: Contract number: Programme: Institute: Project coordinator: Project leader: Health information from primary care 2001/IND/2096 SI (2001CVG3-508) Health Monitoring Directorate General SanCo European Commission Netherlands Institute for Health Services Research (NIVEL) PO Box BN UTRECHT the Netherlands Tel Fax Joan G.M. Deckers François G. Schellevis ISBN NIVEL, Postbus 1568, 3500 BN UTRECHT 7KLVUHSRUWZDVSURGXFHGE\DFRQWUDFWRUIRU+HDOWK &RQVXPHU3URWHFWLRQ'LUHFWRUDWH *HQHUDODQGUHSUHVHQWVWKHYLHZVRIWKHDXWKRU7KHVHYLHZVKDYHQRWEHHQDGRSWHGRULQ DQ\ZD\DSSURYHGE\WKH&RPPLVVLRQDQGGRQRWQHFHVVDULO\UHSUHVHQWWKHYLHZRIWKH &RPPLVVLRQRUWKH'LUHFWRUDWH*HQHUDOIRU+HDOWKDQG&RQVXPHU3URWHFWLRQ7KH (XURSHDQ&RPPLVVLRQGRHVQRWJXDUDQWHHWKHDFFXUDF\RIWKHGDWDLQFOXGHGLQWKLVVWXG\ QRUGRHVLWDFFHSWUHVSRQVLELOLW\IRUDQ\XVHPDGHWKHUHRI Contents ([HFXWLYH6XPPDU\ $EEUHYLDWLRQV,QWURGXFWLRQ 1.1 Background Project aims Participants and meetings Overview of the report 11 'HVFULSWLRQRISULPDU\FDUHUHJLVWUDWLRQQHWZRUNV 2.1 Summary Background Purpose Methods Findings Future of primary care networks Conclusion 19 3ULPDU\FDUH±VLWXDWLRQLQVHYHQ(XURSHDQFRXQWULHV 3.1 Summary Background Purpose Methods Findings New developments Conclusion 26 'HYHORSPHQWRIKHDOWKLQGLFDWRUSURILOHV 4.1 Summary Background Purpose Methods Results Conclusion 31,QWHUQDWLRQDOFRPSDULVRQRIGLVHDVHV 5.1 Summary Introduction Methods and general results Asthma Low back pain Chickenpox 38! $#%&('*) +,+- 3 5.7 Depression Diabetes mellitus Gastroenteritis Herper zoster Stroke Conclusion 49 &RQFOXVLRQVDQGUHFRPPHQGDWLRQV 6.1 Introduction Primary care networks Primary care in seven European countries Health indicator profiles International comparison of diseases Future developments Final conclusion 54 $FNQRZOHGJPHQWV 5HIHUHQFHV $SSHQGLFHV 4! $#%&('*) +,+- ([HFXWLYH6XPPDU\ This is the final report of the project Health Information from Primary Care which was carried out between December 1, 2001 and March 31, 2004 as part of the Health Monitoring sub-programme of the Public Health Programme of the European Commission (Directorate-General Health and Consumer Protection). 2EMHFWLYH The objective of the project was (1) to establish the appropriateness of information from routine primary care as a source for epidemiological data on European Community Health Indicators and (2) to develop and test the feasibility of Health Indicator Profiles for establishing the validity and comparability of the information from Member States. A secondary aim was to extend the project activities to EU Member States which cannot deliver these epidemiological data so far. $FWLYLWLHV The project activities included the following: (1) collect epidemiological information for eight selected diseases in eight primary care based networks; (2) perform site visits with standardised questionnaires and checklist to the participating primary care networks to collect methodological and circumstantial information about the provided epidemiological data; (3) develop Health Indicator Profiles for the selected diseases to clarify the appropriateness of primary care as source of epidemiological information and (4) to provide information on the validity and international comparability of information from primary care; (5) contact representatives from non-participating countries in order to study the possibilities of collecting and/or delivering data from primary care, (6) formulate recommendations on data collection and data analysis by primary care networks and the suitability of primary care as information source. 5HVXOWV The results of the project can be summarised as follows: œ Eight primary care networks in Belgium, England & Wales, France (two networks), Germany, the Netherlands, Portugal and Spain delivered epidemiological information. In general, the networks comprise a stable group of general practitioners and monitor a representative sample of the general population (either at regional or national level). All networks apply procedures to ensure the quality of the collected data; œ Epidemiological information was obtained for acute diarrhoea/gastroenteritis, asthma, low back pain, chickenpox, depression, diabetes mellitus, herpes zoster and stroke/tia. For these conditions information was available from at least three countries in the period ; œ Specific health indicator profiles (HIPs) have been developed for each disease. These profiles contain information on epidemiological, clinical and contextual information per country;! $#%&('*) +,+- 5 ! $#%&('*) +,+œ œ Health indicator profiles were applied to the information obtained for the selected diseases. The least variation in clinical and contextual information was observed for chickenpox, diabetes mellitus, herpes zoster and stroke. The incidence rates for these diseases were to a large extent comparable or differences could be explained. The clinical and contextual information for asthma, low back pain, depression and gastroenteritis showed more variation in the incidence rates. When comparing primary care based morbidity data from different countries, differences with regard to the primary care context have to be taken into account. Although in most countries primary care is the entry point to the health care system, the number of directly accessible health care professionals providing diagnostic services, including the general practitioner, is variable between countries; A follow-up project concerning the provision of data from electronic medical records in primary care not only has participants from Spain, England & Wales, France and the Netherlands but also from Denmark, Italy and Malta. &RQFOXVLRQVDQGUHFRPPHQGDWLRQV œ Primary care networks can fill the information gap between population-based health information and hospital-based data; œ Minimum criteria that need to be fulfilled in order to establish a reliable primary care network include continuous surveillance of public health issues. Age and gender specificity is required for most conditions and the epidemiological denominator needs to established in a reliable way. The frequency of reporting depends on the disease but has to be at least annually and should be more frequent in case of infectious diseases. Lastly quality measures need to be in place; œ Structural funding is an essential prerequisite to establish and maintain a network; œ In those countries where the general practitioner does not function as a gatekeeper we recommend the inclusion of directly accessible specialists like paediatricians and gynaecologists in a primary care network; œ Health indicator profiles have been developed as a generic model to facilitate and validate international comparisons. Although developed for primary care, its use can be extended beyond that; œ Primary care networks can be used as an information source for chickenpox, diabetes mellitus, herpes zoster and stroke. More validation and harmonisation of findings for low back pain, chickenpox, depression and gastroenteritis has to be performed before primary care can be used as a valuable information source for these conditions. We expect the influences of different health care systems and cultural background to be smallest for somatic diseases affecting adults; œ Primary care networks can have a role in public health monitoring and therefore strongly advise the implementation of a primary care network in each country. 6 $EEUHYLDWLRQV $EEUHYLDWLRQ 'HVFULSWLRQ A&E Accidents and emergency BE Belgium COPD Chronic obstructive pulmonary disease CVA Cerebrovascular accident DE Germany DM Diabetes mellitus E&W England & Wales EC European commission ECHI European community health indicators EISS European influenza surveillance scheme ES Spain ES-CyL Spain (region Castilla & Léon) ES-MA Spain (region Madrid) ES-PV Spain (region Basque Country) ES-VA Spain (region Valencia) EUPHIN/HIEMS European union public health information network / health indicators exchange and monitoring system FR-I France Inserm FR-OR France Open Rome fte Full-time equivalent GP General practitioner HES Health examination survey HIP Health indicator profile HIS Health interview survey ICD International classification of disease ICPC International classification of primary care IOM Institute of medicine LBP Low back pain NIVEL Netherlands institute for health services research NL the Netherlands NL-NS2 the Netherlands (2 nd Dutch National Survey of General Practice) OMG Observatoire de la médecine générale PT Portugal SESAM Sächsischen epidemiologischen Studie in der Allegemeinmedizin SFMG la Société Française de médecine générale STD Sexually transmitted disease TIA Transient ischemic attack WHO World health organization WONCA World organization of family doctors! $#%&('*) +,+- 7 8! $#%&('*) +,+- ,QWURGXFWLRQ %DFNJURXQG The Health Information from Primary Care project was funded by the European Commission, DG Sanco as part of the Community Action Programme on Health Monitoring (adopted ). The objective of the programme ZDVµ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previous project ( Health Monitoring in Sentinel Practice Networks ) performed by our institute has made an inventory of primary care networks that collect primary care based data related to health status (i.e. morbidity) on a continuous basis. 2 Furthermore in this project a pilot study has been performed on the international comparability of disease data collected by primary care networks. In the scope of another project within the framework of the Health Monitoring Programme a set of European Community Health Indicators (ECHI) has been developed to prepare a Community health data exchange system. 3 This proposed list of health indicators includes diseases responsible for a large share of the burden of ill health and diseases related to certain risk factors or issues of prevention and health care. The need for comparable epidemiological data is identified as an important development area. The results and recommendations from these two projects were the basis for this project. A pan-european surveillance system using primary care networks already exists for influenza. 4 The European Influenza Surveillance Scheme (EISS) began in 1995 with the participation of seven countries: Belgium, France, Germany, the Netherlands, Portugal, Spain and the United Kingdom. The clinical surveillance of influenza is based on reports from GPs in primary care networks. There are many reasons why influenza surveillance networks in Europe have got together to share information. Influenza is a communicable disease that spreads rapidly and efficiently; this means that it is very beneficial for countries to be informed about influenza activity in neighbouring countries (clinical incidences and types/subtypes/strains). Other benefits of working together are that surveillance systems can learn from each other and improve their surveillance activities. Collaboration also helps the creation and development of disease surveillance networks across the whole of Europe.! $#%&('*) +,+- 9 3URMHFWDLPV The project seeks primarily to contribute to the European Union Public Health Information Network / Health Indicators Exchange and Monitoring System (EUPHIN/HIEMS). The project aim is to study the feasibility of providing epidemiological information on health indicators. Data will be derived from routine primary care delivery for diseases that are exclusively or predominantly managed in primary care. Health Indicator Profiles (HIP) will be developed that help to clarify the appropriateness of primary care as source of epidemiological information. A second aim of these profiles will be to provide information on the validity and international comparability of information from primary care. This will allow adequate interpretation of the information and enable valid comparisons between countries. Moreover an attempt will be made to extend the project activities to EU member states which so far have not been able to deliver these epidemiological data. 3DUWLFLSDQWVDQGPHHWLQJV The project was carried out at the Netherlands Institute for Health Services Research (NIVEL) by Joan Deckers (researcher) and François Schellevis (project leader). The European primary care networks had the following representatives taking part in the project: œ Aad Bartelds (Continue Morbiditeits Registratie Peilstations, NIVEL, Utrecht, the Netherlands) œ Nathalie Bossuyt (Belgisch network van Huisartsenpeilpraktijken, Scientific Institute for Public Health, Brussels, Belgium) œ Jean-Marie Cohen (Open Rome, Paris, France) œ Isabel Falcao (Médicos-Sentinela, Instituto Nacional da Saude, Lisbon, Portugal) œ Antoine Flahault (Réseau Sentinelles, Inserm, Paris, France) œ Douglas Fleming (Weekly Returns Service, Birmingham Research Unit of Royal College of General Practitioners, Birmingham, United Kingdom) œ Anja Frenzen (Sächsischen epidemiologischen Studie in der Allgemeinmedizin (SESAM) III, Leipzig University, Leipzig, Germany) œ Jean-Luc Gallais (Observatoire de la Médecine Générale (OMG) de la Société Française de Médecine Générale (SFMG), Issy les Moulineaux, France) œ Hagen Sandholzer (SESAM III, Leipzig University, Leipzig, Germany) œ Viviane van Casteren (Belgisch network van Huisartsenpeilpraktijken, Scientific Institute for Public Health, Brussels, Belgium) œ Tomas Vega Alonso (Red de Médicos Centinelas de Castilla y León, Dirección General de Salud Pública y Consumo, Valladolid, Spain) on behalf of the regional Spanish primary care networks. A total of five meetings was organised in which the progress of the project was discussed. These meetings took place on February 2002 (Utrecht, NL), June ! $#%&('*) +,+- (Paris, FR), March 2003 (Utrecht, NL), 30 September-1 October 2003 (Valladolid, ES) and February 2003 (Brussels, BE). The meeting minutes can be found in appendix A. 2YHUYLHZRIWKHUHSRUW One of the aims of the European Public Health Programme is to collect information on health status in the individual Member States and to make this information on a European level available to the individual Member States. To achieve this, a set of European Community Health Indicators has been established. In general, an indicator needs to be valid (i.e. measure what one thinks it measures), be sensitive to changes over time and be comparable between countries and regions. Disease-specific morbidity at the population level is one of the areas of interest. This report studies the feasibility of routinely collected data from primary care as an information source for these health indicators. When using morbidity data as indicator for (differences in) health status between countries, it is important that the actual data are valid and comparable. Differences in operation and recording by the networks, and differences in health systems affect the validity and comparability of morbidity data from primary care. We therefore start with a description of the structure and operation of various primary care based registration networks in Europe (Chapter 2), to explore whether methodological issues can account for observed differences. We continue with a discussion of the primary care situation in the participating countries in chapter 3, to see to what extent variation in health systems may affect the results. We then present health indicator profiles, a tool for international comparison of health data (Chapter 4). The profiles represent a structured approach for international comparisons. These profiles are applied in chapter 5 in which primary care data for eight diseases from various networks are compared. Finally, we give recommendations and conclusions for the use of primary care data in European perspective in chapter 6.! $#%&('*) +,+- 11 12! $#%&('*) +,+- 'HVFULSWLRQRISULPDU\FDUHUHJLVWUDWLRQQHWZRUNV 6XPPDU\ In many European countries, primary care practice networks are in place and play a major role in public health surveillance. These networks are organised and function in varying ways. Information from them is one of the potential sources for a European health information and monitoring system which is envisaged in the European Public Health Programme. However, a detailed description of each data source is a prerequisite to ensure the validity and quality of the data and the validity of comparisons. In a previous project, an inventory was made of functioning primary care networks collecting morbidity data on a continuous basis, according to the definition: µ$qhwzrunrisudfwlfhvrufrppxqlw\edvhgsulpdu\fduh SK\VLFLDQVZKRPRQLWRURQHRUPRUHVSHFLILFLOOQHVVSUREOHPVRQDUHJXODUDQGFRQWLQXLQJEDVLV. Site visits were made to those networks cooperating in the current project which delivered epidemiological information. A standardised questionnaire was used to investigate aspects of function and recording quality. Eight primary care networks in Belgium, England & Wales, France (two networks), Germany, the Netherlands, Portugal and Spain delivered basic epidemiological information (case definition, numerator/denominator stratified for gender and age groups) on diseases mainly managed in primary care. Most of these networks are funded by their respective Ministries of Health, some others by governmental research funds. In general, the networks comprise a stable group of general practitioners (GPs) and monitor a representative sample of the general population (either at regional or national level). Some networks monitor all diagnoses presented and others a limited selection of diseases. Many of the networks use disease-specific questionnaires to provide enhanced data on selected diseases for specific purposes. The frequency of reporting by the central organisation of the networks varies from daily to annually. Primary care surveillance networks are an important tool for public health surveillance in Europe (particularly for, but not restricted to infectious diseases). Organisations running a primary care network can learn from networks in other countries and where necessary improve their own functioning. When all networks fulfil identical minimal criteria these networks can provide comparable estimates of morbidity attributed to certain diseases and this will ultimately lead to improved surveillance nationally and internationally. %DFNJURXQG The health of the population is a major concern for every national government. International comparisons help us to understand the reason for apparent national differences. Reliable and continuing information on health (and health related problems) and on the prevalence and incidence of disease are paramount. This information need is the basis for national surveillance-systems. Several sources of data are available: for example mortality statistics, hospital discharge registers, disease-specific registers, notification registers, prescription databases. However, no data source is totally comprehensive and all data sources provide information, limited to the purpose for which! $#%&('*) +,+- 13 each was established. Many conditions do not lead to hospital admission or death but have a great impact on the health and wellbeing of the population and on national economies Data from primary care and health interview and health examination surveys (HIS/HES) are needed to inform on these. Primary care is often the entry-point into the
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