Project funded in 2003 - Strand 1: Health Information

EURO-PERISTAT 2 - A comprehensive health information and knowledge system for evaluating and monitoring perinatal health in Europe (Phase 2)
Description      -      Financing      -      Outcomes      -      More info
Description
Action
Improving information and knowledge for the development of public health

Area of activity

EURO-PERISTAT 2 - A comprehensive health information and knowledge system for evaluating and monitoring perinatal health in Europe Summary
This project aims to complete the development of a strategy for health information and knowledge in the field of perinatal health for a European Community health information system by focussing on two principal aims:
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.
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.

To achieve these aims, the project has four principal objectives (1) integrate the new member states; (2) establish new indicators; (3) develop methods for compiling high quality indicators; and (4) design a reporting methodology.
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Description      -      Financing      -      Outcomes      -      More info
Financing
Leader organisation
AP-HP (Assistance Publique - Hôpitaux de Paris)
3, avenue Victoria
75100 Paris
FRANCE
Tel: +33.(0).1.40.27.41.31
Fax: +33.(0).1.40.27.4108
E-mail: euro.aphp@sap.aphop-paris.fr
Contact Person
Jennifer Zeitlin
E-mail: zeitlin@cochin.inserm.fr
Web site: http://europeristat.aphp.fr/en/index.html
Associated beneficiaries
CITYU (City University), London – established in the United Kingdom (UK)
Université libre de Bruxelles, Ecole de santé publique (ULB)– established in Belgium (BE)
Universidade do Porto, Faculdade de Medicina do Porto (FMUP)– established in Portugal (PT)
Sosiaali-Ja Terveysalan Tutkimus-Ja Kehittamiskeskus - National Research and Development Centre for Welfare and Health (STAKES) – established in Finland (FI)
Nederlandse Organisatie Voor Toegepast Natuurwetenschappelijk Onderzoek – Netherland Institute for Applied Scientific Research (TNO) – established in The Netherlands (NL)
Magyar Nöorvostarsasag - Hungarian Society of Obstetrics and Gynecology (HSOG) – established in Hungary (HU)
Univerza v Ljubljana -Department of Perinatalogy, Division of Obstetrics and Gynecology (SLV)– established in Slovenia (SL)
Ustav zdravotnickych informacii a statistiky - Institute Health Information and Statistics (IHIS) – established in Slovak Republic (SL)
Institut National de la Santé et de la Recherche Médicale (INSERM) – established in France (FR)
Université Joseph Fourier Grenoble I (SPCE) - established in France (FR)
Medizinische Universität Wien - Abteilung für Epidemiologie (MUW) - established in Wien, Austria (AT)
Ministry of Health (MOH) - established in Nicosia, Cyprus (CY)
Ustav pro peci o matku a dite (UPMD) - established in Prague, Czech Republic (CZ)
Københavns Universitet - Obstetrisk klinik Rigshospitalet (RIGIT) - established in Copenhagen, Denmark (DK)
Eesti vabariigi Sotsiaalministeerium (SoM) - established in Tallinn, Estonia (EE)
Bayerische Arbeitsgemeinschaft für Qualitätssicherung in der stationären Versorgung (BAQ) - established in München, Germany (DE)
Ethniko Kai Kapodistriako Panepistimio Athinon (NUA) - established in Athens, Greece (GR)
The Economic and Social Research Institute, National Perinatal Reporting Scheme (ESRI) - established in Dublin, Ireland (IE)
Ospedale Pediatrico Bambino Gesù (OPBG) - established in Roma, Italy (IT)
Veselības statistikas un medicīnas tehnoloģiju aģentūra(VSMTA) - established in Riga, Latvia (LV)
Lietuvos sveikatos informacijos centras (LSIC) - established in Vilnius, Lithuania (LI)
Ministère de la Santé, Direction de la Santé, Division de la Médecine Préventive et Sociale (MS) - established in Luxembourg (LU)
Department of health Information - National Obstetric Information System (DHI) - established in Valetta, Malta (MT)
Universitetet i Bergen - Medisinsk fødselsregister (MBRN) - established in Bergen, Norway (NO)
Instytut Matki i Dziecka, Zaklad Epidemiologii (NRIMC) - established in Warszawa, Poland (PL)
Universidad Miguel Hernandez de Elche - Departamento de Salud Publica (UMH) - established in Elche (Alicante), Spain (ES)
Uppsala Universitet - Internationell mödra- och barnhälsovård, Institutionen för kvinnors och barns hälsa (IMCH) - established in Uppsala, Sweden (SE)
Enable Ireland Disability Services LTD (EIC) - established in Dublin, Ireland (IE)
Kauno vaiko raidos klinika Lopselis (LOPSELIS) - established in Vilnius, Lithuania (LT)
Starting date and duration of project
- 15/12/2004
- 36 months
Total cost
1.411.317,33 €
Subsidy from the Commission
846.776,97 €
Description      -      Financing      -      Outcomes      -      More info
Outcomes
The principal deliverables of this project are:
1. A set of recommended perinatal health indicators reflecting health needs in the 25 member states of the European Union. This result will be obtained by
1.1 A set of recommended perinatal health indicators reflecting health needs in the 25 member states of the European Union and endorsed by perinatal health professionals in all countries
1.2 Identification of data providers for perinatal health indicators in new member states
1.3 An assessment of the feasibility of implementing the PERISTAT indicator set with available data 2. Recommended operational definitions and data sources for new health indicators in the four key areas identified for further work in the PERISTAT project:
2.1. Neonatal morbidity and longer-term impairments of perinatal origin, such as cerebral palsy.
2.2. Morbidity in women during pregnancy, delivery and the postpartum period
2.3. positive measures of the outcome of pregnancy
2.4. reproductive health in socially excluded groups and social inequalities3. A strategy for implementing the PERISTAT recommended indicator set including
3.1. Recommended techniques for improving quality of PERISTAT indicators based on data cleaning, data linkage and multiple source validation, European common databases.
3.2. Minimum dataset needed to construct PERISTAT indicators (complete data dictionary and definitions provided).
3.3. Paper and/or web-based protocol for transmission of data needed to construct indicators, with current sources for transmission for each country.
3.4. Proposed methods, including instrument and protocol, for collecting PERISTAT indicators in countries where data do not exist, based on a routine sample survey of births.4. Analyses of the validity of current perinatal health indicators in Europe and the current state of perinatal health in Europe, published in peer-reviewed scientific journals (international and national) and made available to scientists and policy-makers, based on data from:
4.1 The first PERISTAT feasibility study
4.2 Analysis of the impact of multiple births on congenital anomalies and cerebral palsy, from data from population-based registers and routine data collection systems.
4.3 Background reviews and pilot studies to develop new indicators of neonatal and maternal morbidity and positive reproductive outcomes. 5. Established collaborations between routine data systems and population based registers including
5.1. agreements on common definitions for individual data items collected within routine data systems and population registers and
5.2. common methods for data analyses.6. Reinforcement of the European Network of Cerebral Palsy registers
6.1. Incorporation of existing CP registers from Slovenia, West Ireland
6.2. Dissemination of the completed tool SCPE_R&TM (= Cerebral Palsy Registers Reference & Training Manual) to all registers
6.3. Completion of the electronic data submission tool
6.4. Establishment of CP registers in new countries
6.5. Increment of the SCPE database for birth years 1997-1998 and new registers 7. Assessment of current European investment in follow-up programs for high-risk newborns and these programs' capacity to provide routine outcome data for this population. Information on the populations monitored, data items collected and coverage rates can be used by health agencies wishing to improve local systems. 8. Integrated report on the strategy for developing a perinatal health information system, including exact definitions of all recommended indicators, recommendations for construction of indicators, data collection tools and presentation format. This report will also include orientations for future work.9. Methodology for reporting to targets audiences that achieves best use of data for surveillance and evaluation of health outcomes, practices and policy. 10. Data on perinatal health in Europe from the modified set of PERISTAT II indicators for the year 2004 or most recent year. 11. Comprehensive report on reproductive health in the perinatal period for 2004 or most recent year including an analysis of indicators available in Europe and the current perinatal health situation. These data will be presented for the first time in the new countries, and with a comparative perspective for the 15 member states for which data were collected in 2000.12. Project management report, covering minutes from all meetings. - Interim reportpdf(2 MB)image (1.5 MB)
Description      -      Financing      -      Outcomes      -      More info
More info
Statement of project aim(s) and objectivesWithin the European Union, there are great disparities in perinatal health outcomes: fetal and neonatal mortality rates are almost twice as high in higher-mortality versus lower-mortality countries. Europe is also heterogeneous in its approaches to care provision: for instance, caesarean section rates vary from 12% to over 30% by country. Improving the health of pregnant women and newborns and promoting best practices is a priority for Europe.
Europe faces common challenges for the future. Advances in medical technology are pushing back the limits of viability and saving babies who would previously have died, but simultaneously creating sub-populations of babies at high risk of disabling impairments. Management of sub-fertility and the antenatal diagnosis of congenital anomalies have also advanced. However, health systems must succeed in using these medical innovations without generating iatrogenic health risks, anxiety for parents and unacceptably high costs for the majority of births that take place without major complications. Europe's population is also changing. Women are bearing children at later ages, more pregnancies result from the management of sub-fertility and multiple births are more frequent. Migrant and marginalised women have specific and diverse health needs that require access to culturally appropriate care.Sharing knowledge about health outcomes and practices is critical for monitoring trends and developing effective national and European health policies. The indicators currently available provide valuable information, but remain insufficient, both in quality and breadth. Europe has invested substantially in perinatal health and has financed research that has generated knowledge and promoted connections between researchers and clinicians throughout the continent. Yet, this investment has not been directed at improving routine health reporting. The first PERISTAT project built on past work to develop recommended indicators for Europe. The PERISTAT indicator set includes 10 core indicators and 11 recommended indicators for immediate implementation. PERISTAT also identified areas requiring further development, including measures of maternal health, longer-term impairments of perinatal origin, positive reproductive health outcomes and the health of socially excluded groups. PERISTAT II aims to complete the scientific work on these indicators and make comprehensive recommendations encompassing more fully the essential dimensions of perinatal health.
In its first phase, PERISTAT undertook an exercise to test the capacity of the member states to provide the recommended indicators using data for the 2000. This brought to light both the positive and negative aspects of the current situation in Europe. On the optimistic side, European countries can provide many of the PERISTAT indicators. Even for less widely available indicators, at least 3 or 4 countries – and not always the same ones – could provide data; this finding shows that the PERISTAT recommendations are realistic. Despite this, full implementation of a health information system at the European level will require most countries to invest in their data collection systems.PERISTAT II aims to use existing European expertise to develop recommendations for extending data collection systems to produce high-quality data for constructing perinatal health indicators in a timely manner for a European community health indicator system. The project has four principal objectives:
1.Expand and adapt the PERISTAT indicators to the new member states;
2.Establish new indicators for four themes identified for further development by PERISTAT;
3.Develop methods for compiling high quality indicators and use them to collect data from member states and new member states;
4.Design a reporting methodology to target key audiences, and use it to produce a comprehensive report on reproductive health in the perinatal period with data from the most recent period.
Methods 1.3.1. Integrate the new member states
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. 1.3.2. Establish new indicators
Conduct the technical scientific work on new health indicators. Develop, pilot and implement indicators of:
- Neonatal morbidity and longer-term impairments of perinatal origin, such as cerebral palsy.
- Morbidity in women during pregnancy, delivery and the postpartum period
- Positive indicators of outcome of pregnancy
- Perinatal health in socially excluded groups 1.3.3. Develop methods for compiling high quality indicators and use them to collect data
Develop methods for routine compilation of high-quality perinatal health indicators, including
- improved routine data quality through record linkage, more timely processing, expanded analysis, compilation of Europe-wide databases
- a minimum dataset
- data collection methods for countries that do not have data available
- links with European networks of morbidity registers
Use these methods to collect data to construct and analyse the PERISTAT indicators.1.3.4. Design a reporting methodology and produce a reproductive health report
Consult with target groups, including health policy makers, consumer groups, and health professionals to assess their understanding and needs with respect to information on reproductive health and health services in the perinatal period. This consultation process will inform a reporting methodology for periodic health reports that will be used to report on perinatal health.