Draft mandate Morbidity and Mortality Working Party

Transcription

1 Draft mandate Morbidity and Mortality Working Party Luxembourg, Purpose of the Morbidity and Mortality Working Party (MMWP) The purpose of the Morbidity and Mortality Working Party (MMWP) is to provide a forum for discussion and exchange of views and experience on information and knowledge in the fields of Morbidity and Mortality at National, Sub-national and European Union level. The MMWP will serve as an expert group to advise on information and knowledge for monitoring Community policies and other initiatives in the field of morbidity and mortality. The MMWP will act according to the terms of Decision No 1786/2002/EC of the European Parliament and of the Council of 23 September 2002 adopting a program of Community action in the field of public health ( ). This programme establishes in Article 3 (ii): activities to counter health threats, including major diseases, and react to unforeseen events, enable investigations and coordinate response; in Article 3 (iii): preparation, establishment and operation of appropriate structural arrangements coordinating and integrating networks for health monitoring and for rapid reaction to health threats, and in the Annex: developing strategies and mechanisms for preventing, exchanging information on and responding to noncommunicable disease threats, including gender-specific health threats and rare diseases. The concept of health information and knowledge should be understood for the major diseases as the collection, processing, sharing and analysis of objective, reliable, compatible and comparable data on diseases affecting human health. Issues to be addressed, to make disease information more relevant to Community action in the field of public health, include identification of the main user groups, of the problems identified at EU level - such as the quality of available data (e.g. timeliness, comparability), gaps in information and inaccessible data (e.g. data that are not widely available). The MMWP will thus contribute to the improvement of the information and knowledge for the development of public health. It will assist the Commission in the development and coordination of the Health Information System, completing the technical and scientific background work for the establishment of major and rare disease indicators and other information needs. 2. What dimensions of morbidity/mortality are we dealing with? The activity in the field of morbidity and mortality will concern non communicable diseases (including rare diseases) as well as chronic conditions in the following dimensions: Objective morbidity reflects real health needs independent from the subjective point of view of both the patient and the examiner. This is the classic incidence and prevalence data concerning the real health problems (diseases) as they are described by medical science at that time.

2 Self-reported morbidity is completely linked to the patient s personal feelings via HIS (Health Interview Surveys) independently from any objectivity or diagnosis. Risk factors for morbidity via national population based HES (Health Examination Surveys) with a general broad (non-disease specific/focused) health focus or as defined in some epidemiological studies. Other individual examinations performed of either in an entire survey or according to chosen health topics in some surveys. Diagnosed morbidity which only intervenes at the final stages of the process reflects both the results of the previous steps (hence the need and the demand), as well as the functioning of the health system itself. For this very reason, it is also an indicator of the socioeconomic implication of morbidity. Health conditions dimensions related to specific categories (e.g. child health, etc.) as well as indicators related to the International Classification of Functioning, Disability and Health (ICF). In this domain physical functioning is an aspect that could be analysed by the MMWP. Mortality, as the analysis of European mortality trends outlining the important differences for various causes of death before attempting to interpret the inter-country differences in terms of etiological factors assessing the possible biases affecting the comparability of the data. For the following diseases the MMWP will not deal with the morbidity dimension (but it will deal with the mortality dimension or with the morbid conditions leading to a disability): Communicable diseases, as defined by the Decision No EC/2119/1998 from the European Parliament and the Council, for which a Communicable Disease Surveillance and Control Network Committee has been created; Mental diseases, for which DG SANCO has created a specific Mental Health Working Party; Occupational diseases, for which an Ad hoc group from the Advisory Committee on Safety, Hygiene and Health at Work is responsible for the definition of the list. 3. Duration and members of the MMWP The MMWP is established for the duration of the Public Health Programme Participants in the Working Party are: Project leaders on morbidity and mortality projects under the Public health Programme and former Project leaders from the previous public health programmes in fields as: non communicable diseases, rare diseases, health surveys and causes of death;

3 When relevant competent national experts in morbidity and mortality as nominated by the Network of Competent Authorities among national institutions with expertise in these fields; In order to ensure a wide geographical representation as well as other necessary expertise, competent national experts in the corresponding fields could be invited by DG SANCO. Other participants in the Working Party could be: Project leaders from projects in the corresponding fields under other EU Programmes (BIOMED, Community Statistical Programme, etc.); Representatives from other concerned EC Directorate General s (Eurostat, RTD, ENTR, etc.) Representatives from other concerned international organisations, such as WHO or OECD; When relevant representatives from concerned private international organisations or international NGO s. Priority will be given to promote synergy and avoid duplication with the Community Statistical Programme. The statistical element of the system is developed via the Statistical Programme of the Commission for the year 2003 (adopted on October 2002) which in the Theme 35: Health and safety includes under the title New work the preparation of a collection of morbidity data on selected diseases for which a Eurostat Task Force Morbidity has been created. A close coordination with the OECD and the WHO is also of utmost importance in order to avoid to duplicate efforts and to make use of the experience in disease data build up in these organisations. 4. Organisation of the work of the Morbidity and Mortality Working Party The work of the MMWP will be assisted by a secretariat. The secretariat will be responsible for the coordination of meetings, preparing of background documents for meetings, overall coordination of the related projects under the Public Health Programme in close cooperation with the Commission Services. The Secretariat will be a central focus point for better coordination of the MMWP members and stakeholders (Commission, international organisations etc.). The Commission services and the MMWP shall agree to nominate among the participants a Working Party Leader and a Deputy. The Working Party Leader could co-chair the meetings with the Commission. The MMWP could create, if necessary, ad hoc Task Forces in order to carry out or guide development work in certain specific areas as indicated by the MMWP. Usually the Task Forces will deal with specific, large problems, which can not be solved by the MMWP. Taking account of specific needs in the field of rare diseases, it is suggested to create a Task Force on Rare Diseases.

4 The MMWP shall report on the selection of indicators on diseases to the Working Party Community Health Indicators which has been mandated to oversee the health indicator process. This Working Party will assume the role of Network of Working Party Leaders and report about the work of the Working Parties to the Network of Competent Authorities. 5. Tasks of the Morbidity and Mortality Working Party The tasks of the MMWP are: To communicate results to the Network of Competent Authorities with the aim of improving information flows, preparing decision making by the Member States and achieving the use of a common framework for information on diseases; To contribute with morbidity and mortality indicators to the development of a precisely-defined indicator list, used to prioritise and harmonise data collection, via the European Community Health Indicators (ECHI) projects 1 and 2; To develop health information and analysis and reporting systems, and to improve access to and transfer of data within the annual work plan and thereafter; To implement the annual work plan through networks of public health institutes, health monitoring authorities and the working party (MMWP) in the areas of morbidity and mortality; To contribute, in close coordination with the Task Force Morbidity of Eurostat, to collect comparable morbidity data at EU level, taking account of the very different situations normally encountered at national level. Special attention will be given to inventories and analysis source by source and to the harmonization and methodological description with a final objective: to compare what is really comparable; To contribute to the inventory and to the development of a comprehensive and comparable health measurement for health surveys in the EU and the Member States contributing to develop modules for surveys (HIS and HES). It is intended that models of varying intensity will be developed for the different circumstances in the Member States; To advise the Commission services in the implementation of disease or morbid conditions modules in the Commission Eurobarometer survey; The MMWP will contribute to the preparation of the annual work plans of the Public Health Programme It will assist the Commission in setting priorities in the field of information and knowledge on major and rare diseases, to target the information needs for monitoring initiatives on EU, national and regional level; It shall advise members and Commission Services for specific Public Health Programme projects which focus on morbidity and mortality namely the projects mentioned in the Annex, reviewing, in cooperation with the Commission services, the interim and final reports from projects; It shall advise members and Commission Services on the preparation of a European strategies in information on morbidity and mortality;

5 It will examine morbidity and mortality related issues in other Community policies and their impact (e.g. the Social Protection Committee); The MMWP shall meet at least twice per year. The meetings will be organised by the Commission Services in Luxembourg.

6 Annex List of the projects from the SANCO former programmes (Health Monitoring and Rare Diseases programmes) A. Indicators on major diseases Istituto Superiore di Sanità (Italy) Centre Hospitalier de Luxembourg (Luxembourg) Istituto Nazionale per lo studio e la cura dei tumori (Italy) University of Oslo (Norway) IARC / WHO (France) Fundació IMIM (Institut Municipal d'investigació Mèdica) (Spain) Cardiovascular Indicators Surveillance Set in Europe (EUROCISS 1) (phase 1) Establishment of Indicators Monitoring Diabetes Mellitus and its Morbidity (EUDIP) Health Indicators for Monitoring Cancer in Europe (EUROCHIP 1) (phase 1) Indicators for Monitoring Musculoskeletal Conditions Comprehensive Cancer Monitoring Programme in Europe (CAMON) Indicators for monitoring COPD (Chronical Obstructive Pulmonary Diseases) and asthma in the EU (IMCA) B. Improving health surveys Statistics Netherlands (The Netherlands) National Public Health Institute (KTL) (Finland) INSERM - Démographie et santé c/o Centre Régional de Lutte contre le Cancer de Montpellier (France) INSERM - Démographie et santé c/o Centre Régional de lutte contre le cancer de Montpellier (France) Health Surveys in the EU: HIS and HIS/HES evaluations and models (phase 1) Health Surveys in the EU: HIS and HIS/HES. Evaluations and Models (phase 2) Setting up a coherent set of Health Indicators for most of the Health Aspects (phase 1) Setting up a coherent set of Health Indicators for the European Union (phase 2)

7 C. Improving quality on Mortality data INSERM (Institut National de la Santé et de la Recherche Médicale) (France) Comparability and Quality Improvement in European Causes in Death Statistics D. Morbidity statistics and routine data Office for National Statistics (UK) Office for National Statistics (UK) Université Libre de Bruxelles - Ecole de Santé Publique (Belgium) Methodologies for Producing EU-wide Comparable Disease- Specific Morbidity Data (EUMIP 1) (phase 1) Methodologies for producing EU - Wide comparable disease - Specific morbidity data : enhancement of the electronic inventory of data sources (EUMIP 2) (phase 2) Situation in Europe regarding the Routine Collection of Medical Data and their use in Health Monitoring (EURO-MED-DATA) D. Indicators on health conditions Centre for Health Planning and Management - Keele University (UK) Assistance Publique / Hôpitaux de Paris - INSERM U 149 (France) Universidade de Lisboa - Instituto de Medecina Preventiva - Faculdade de Medicina (Portugal) Université Lyon 1 - Laboratoire d'analyse des systèmes de santé (France) Based on Live Data Child Health Indicators of Life and Development (Bold CHILD) Indicators for Monitoring and Evaluating Perinatal Health in Europe (PERISTAT) Reproductive health indicators in the EU (REPROSTAT) European Global Oral Health Indicators E. Rare diseases INSERM (Institut National de la Santé et de la Recherche Médicale) (France) Department of Internal Medicine - UMC (University Medical Center) ORPHANET 3 (Phase 3) TEAM 2 Ongoing transfer of expertise on prevention, diagnosis and treatment of common complications in adults with rare metabolic diseases (Phase 2)

8 (The Netherlands) Fundació Privada per a la Recerca Biomèdica (Spain) Alzheimer Europe (Luxembourg) European Federation for Neurofibromatosis (Belgium) EURORDIS (European Organisation for Rare Disorders) (France) Centro Nazionale Malatie Rare - Istituto Superiore di Sanità (Italy) University of Ulster (United Kingdom) Medizinische Hochschule Hannover (Germany) PRINTO (Paediatric Rheumatology International Trials Organisation) (Italy) University of Graz (Austria) EURORDIS (European Organisation for Rare Disorders) (France) Istituto di Ricerche Farmacolociche Mario Negri (Italy) Sense International (United Kingdom) INSERM (Institut National de la Santé et de la Recherche Médicale) () (France) SPK (Schlosspark-Klinik KG) (Germany) ENERCA - European Network for Rare Congenital Anaemias Rare Forms of Dementia Project to establish European neurofibromatoses lay group network. Health promotion improving health information and knowledge for neurofibromatoses (NF) in Europe Pan-European network for patients information on rare diseases and orphan drugs (PARD 3) NEPHIRD 2 - a European network for epidemiological and public health data collection on rare diseases (phase 2) EUROCAT 2 : Surveillance of congenital anomalies in Europe (Phase 2) European Network on the epidemiology, pathophysiolgy and treatment of severe chronic neutropenia A European Information Network on Paediatric Rheumatic diseases Rare pulmonary diseases - set up of diagnostic criteria and reference/training center New communication technologies (web site) to the service of the rare disorders network and sharing of good practices in different help services to patients, already existing in Europe (PARD 2) A european educational programme on rare diseases CAUSE - Charge association and Usher Syndrome in Europe ORPHANET 2 (Phase 2) EUROMUSCLENET- Muscle diseases - Prototype of rare and disabling disorders: creation of a European Information Network

9 IPG (Institut de Pathologie et de Génétique) (Belgium) INSERM (Institut National de la Santé et de la Recherche Médicale) () (France) University of Tampere (Finland) Department of Internal Medicine - UMC (University Medical Center) (The Netherlands) Genetic Interest Group (United Kingdom) EURORDIS (European Organisation for Rare Disorders) (France) University of Ulster (United Kingdom) Centro Nazionale Malatie Rare - Istituto Superiore di Sanità (Italy) EDDNAL - European Directory of DNA Laboratories ORPHANET 1: A european database on rare diseases and orphan drugs (PHASE 1) Information network for immunodeficiencies TEAM 1 Transfer of expertise on rare metabolic diseases in adults (phase 1) Creating a European Alliance of Patient and parent groups for genetic services and innovation in medicine (EAGS) Orphan medicinal products to the service of patients affected by rare diseases (PARD 1) EUROCAT1: Surveillance of congenital anomalies in Europe (Phase 1) NEPHIRD 1- a European network for epidemiological and public health data collection on rare diseases (phase 1