First Interim Technical Implementation Report Agreement number : 2003131 Project acronym : EURO-PERISTAT Project title : A comprehensive health information and knowledge system for evaluating and monitoring perinatal health in Europe Reporting period for the progress report: 15/12/2004-15/12/2005 1 PROJECT PARTICIPANTS Names Institution, Country Gérard BRÉART (project leader) AP-HP - Assistance Publique-Hôpitaux de Paris Paris, France Jennifer ZEITLIN (Scientific INSERM U-149 - Institut national de la santé et de la recherche coordinator) médicale Béatrice BLONDEL Paris, France Marie-Hélène BOUVIER-COLLE Meg ZIMBECK Sophie ALEXANDER ULB - Université libre de Bruxelles, Ecole de santé publique Brussels, Belgium Henrique BARROS FMUP - Faculdade de Medicina do Porto Porto, Portugal Istvan BERBIK HSOG - Hungarian Society of Obstetrics and Gynecology Esztergom, Hungary Peter HLAVA UZIS - Ustav zdravotnickych informacii a statistiky Bratislava, Slovakia Simone BUITENDIJK TNO - Institute Prevention and Health Leiden, the Netherlands Christine CANS SCPE Registers, University Joseph Fourier Grenoble 1 Grenoble, France Mika GISSLER STAKES - National Research and Development Centre for Welfare and Health Finland Alison MACFARLANE CITYU - Institute of Health Sciences, City University London, UK Ziva NOVAK ANTOLIC SLV - Department of Perinatalogy, Division of Obstetrics and Gynecology, University Medical Centre Ljubljana, Slovenia 2 Christian VUTUC MUW - Medical University of Vienna, Department of Epidemiology, Centre of Public Health Viena, Austria Pavlos PAVLOU MOH - Health Monitoring Unit, Ministry of Health Nicosia, Cyprus Petr Velebil UPMD - Institute for Care of Mother and Child Prague, Czech Republic Jens LANGHOFF ROOS RIGIT - Obstetrics Clinic, Rigshospitalet, Københavns University Copenhagen, Denmark Luule SAKKEUS SoM - Ministry of Social Affairs, Department of Health Tallinn, Estonia Nicolas LACK BAQ - Bavarian Working Group for Quality Munich, Germany Aris ANTSAKLIS NUA - Athens University, Department of Ob/Gyn Athens, Greece Sheelagh BONHAM ESRI - Economic and Social Research Institute, National Perinatal Reporting Scheme Dublin, Ireland Marina CUTTINI OPBG - Unità di Epidemiologia, Ospedale Pediatrico Bambino Gesù Rome, Italy Inese BIRZULE LSIC - Health Statistics and Medical Technology State Agency Riga, Latvia Aldona GAIŽAUSKIENĖ VSMTA - Lithuanian Health Information Centre, WHO Collaborating Centre for Health Statistics and Information Vilius, Lithuania Yolande WAGENER MS - Ministry of Health, Department of Health, Division of Preventive and Social Medicine Luxembourg 3 Miriam GATT DHI - Department of Health Information, National Obstetric Information Systems (NOIS) Register Guardamangia, Malta Lorentz IRGENS MBRN - University of Bergen, Medical Birth Registry of Norway Bergen, Norway Katarzyna SZAMOTULSKA NRIMC - National Research Institute of Mother and Child, Department of Epidemiology Warsaw, Poland Francisco BOLÚMAR UMH - Miguel Hernandez University, Department of Public Health San Juan, Spain Gunilla LINDMARK IMCH - International Maternal & Child Health Unit, Department of Women's and Children's Health, Uppsala University Uppsala, Sweden Vicki McMANUS EIC - Enable Ireland Cork Cork, Ireland Audrone PRASAUSKIENE Kaunas Child Development Clinic Lopselis Kaunas, Lithuania 4 FIRST INTERIM TECHNICAL IMPLEMENTATION REPORT Table of Contents 1. OVERVIEW OF PROGRESS DURING THE REPORTING PERIOD.................... 6 1.1. Main accomplishments with respect to project objectives ............................... 6 1.1.1 Objective 1: Integrate the new member states................................... 6 1.1.2. Objective 2: Establish new indicators ................................................. 7 1.1.3 Objective 3: Develop methods for compiling high quality indicators and use them to collect data ............................................................. 7 1.1.4 Objective 4: Design a reporting methodology and produce a reproductive health report ............................................................... 8 1.2. Summary of progress on the individual work packages ................................... 9 1.3. Update of progress indicators ......................................................................... 11 1.4. Difficulties encountered in carrying out work................................................ 12 2. CONTRIBUTION OF THE PARTICIPANTS......................................................... 13 2.1. Main Partner: AP-HP (Project Leader), France.............................................. 13 2.2. Associated partner 1: INSERM U149 (Scientific coordinator), France ......... 14 2.3. Associated partner 8: STAKES (National Research and Development Centre for Welfare and Health, Finland).......................................................................... 21 2.4. Associated Partner 2: SCPE-UJF (University Joseph Fourier Grenoble 1)........ 22 2.5. Associated partner 5: ULB. (Université libre de Bruxelles, Ecole de santé publique, Belgium).......................................................................................... 24 2.6. Associated partner 4: CITYU (Institute of Health Sciences, City University, London, UK) ................................................................................................... 25 2.7. Associated partner 3: TNO-pg Institute Prevention and Health Leiden, the Netherlands ..................................................................................................... 26 2.8. Associated partner 7: UZIS (Institute Health Information and Statistics (IHIS), Ustav zdravotnickych informacii a statistiky, Slovakia) ................................ 27 2.9. Steering committee members not responsible for a work package................. 28 2.10. Scientific committee members from new member states and Norway........... 28 2.11. Scientific committee members from old member states................................. 30 3. PROJECT MANAGEMENT AND CO-ORDINATION ......................................... 31 4. ANNEX..................................................................................................................... 33 5 1. OVERVIEW OF PROGRESS DURING THE REPORTING PERIOD The EURO-PERISTAT project aims to complete the development of a strategy for monitoring and evaluating perinatal health in the European Union. Perinatal indicators include maternal, fetal and infant health during pregnancy, delivery and the postpartum period, as well as the health consequences of events that occur in the perinatal period. They also measure demographic, medical, social and health system factors that impact perinatal health. The project has two principal focuses: 1. Establish mechanisms to compile and to report on the perinatal health indicators recommended for immediate implementation by the PERISTAT project, including adapting them to the health context in new member states. These will focus on improving data quality, extending the scope of data collection systems, building collaborations between data providers, proposing data collection methods for countries that do not have available data and developing protocols for compiling, transmitting and disseminating data. 2. Conduct the technical scientific work on the health indicators identified by PERISTAT for future development to make recommendations for a comprehensive indicator set encompassing more fully the essential dimensions of perinatal health and to support the collection of data on these indicators. Four specific objectives were defined: (1) integrate the new member states; (2) establish new indicators; (3) develop methods for compiling high quality indicators (4) design a reporting methodology. 1.1. Main accomplishments with respect to project objectives The plans for this reporting period and principal accomplishments with respect to these 4 objectives are presented below. More detail for each accomplishment is provided in the summary of the work packages (1.2) and in the report provided by the participant responsible for the activity (section 3). 1.1.1 Objective 1: Integrate the new member states Objectives for reporting period: Conduct a consensus process with scientists from the new member states to adapt the PERISTAT indicator list to the health context in these countries, and assess the feasibility of collecting indicators through a survey of national data providers. This work for this objective is contained in WP2. Principal accomplishments: 6 The EURO-PERISTAT committees were expanded to include participants from new member states. EURO-PERISTAT now includes an official partner (Scientific Committee) as well as other scientific advisors (Scientific Advisory Group) from each EU member state. The Steering Committee met with partners from new member states in Bratislava to present the project, assess new member state data collection systems and explain the consensus methodology to be used for making modifications to the indicators. A DELPHI consensus process was used to adapt the PERISTAT indicator list to reflect the health context of new member states Two rounds were completed with excellent response rates. The final results are being circulated to members and the final report should be ready by the end of February (see Annex for the results and instruments from these two rounds). Members from the new members states provided assessments of the feasibility of the PERISTAT indicators both at the meeting in Bratislava (reports from members included in Annex) and explicitly in the DELPHI survey. A synthesis of these reports is