EU health information progress: the harvest of policy supporting projects and networks.

BACKGROUND: The European Commission supports the initiation of health information related projects and networks serving comparative population health monitoring and health system performance assessment. Many of these projects and networks have produced relevant data, standards, methods, indicators and knowledge that may be lost as these networks become inactive. The aim of this project retrieval and review was to identify health information projects and networks and their produced output; and subsequently facilitate systematic access to this information for policy makers, researchers and interested others via a web-based repository. METHODS: The scope of this article covers 1. population health oriented topics and 2. health system/health services oriented topics. Out of scope are specific infectious diseases; individual rare diseases; and the occurrence and effects of specific medical treatments, interventions and diagnostics; cohort studies; or studies focusing on research methods. We searched bibliographic databases and EU project databases for policy supporting projects and networks and selected those fulfilling our inclusion criteria after more in-depth inspection. We searched for their outputs. In addition, we reviewed country participation in these projects and networks. RESULTS: We identified 36 projects and networks, 16 of which are population health oriented, 6 are health systems and services oriented and 14 cover both. Their total volume of output is not easily retrievable, as many project websites have been discontinued. Some networks and/or their outputs have found continuance within European agencies and/or national institutions. Others are struggling or have gone lost, despite their policy relevance. Participation in the projects was not evenly distributed across Europe. Project information was made available through the Health Information Portal. CONCLUSIONS: EU funded projects and networks have contributed greatly to the evidence-base for policy by providing comparative health information. However, more action is needed to evaluate and conserve their outputs and facilitate continued contribution to the field after project funding stops. The realization of a sustainable infrastructure for these projects and networks is urgent. The Health Information Portal can play an important role in conserving and reusing health information. Information inequalities may exist across Europe but need further investigating.

Four normative perspectives on public health policy-making and their preferences for bodies of evidence.

Calls for evidence-informed public health policy-making often ignore that there are multiple, and often competing, bodies of potentially relevant evidence to which policy-makers have recourse in identifying policy priorities and taking decisions. In this paper, we illustrate how policy frames may favour the use of specific bodies of evidence. For the sixth Dutch Public Health Status and Foresight report (2014), possible future trends in population health and healthcare expenditure were used as a starting point for a deliberative dialogue with stakeholders to identify and formulate the most important societal challenges for the Dutch health system. Working with these stakeholders, we expanded these societal challenges into four normative perspectives on public health. These perspectives can be regarded as policy frames. In each of the perspectives, a specific body of evidence is favoured and other types of evidence are neglected. Crucial outcomes in one body may be regarded as irrelevant from other perspectives. Consequently, the results of research from a single body of evidence may not be helpful in the policy-making processes because policy-makers need to account for trade-offs between all competing interests and values. To support these policy processes, researchers need to combine qualitative and quantitative methodologies to address different outcomes from the start of their studies. We feel it is time for the research community to re-politicise the idea of evidence use and for policy-makers to demand research that helps them to account for all health-related policy goals. This is a prerequisite for real evidence-informed policy-making.

[Decrease in foetal and neonatal mortality in the Netherlands; comparison with other Euro-Peristat countries in 2004, 2010 and 2015]. / Afname van foetale en neonatale sterfte in Nederland.

OBJECTIVE: To compare changes in foetal, neonatal and perinatal mortality in the Netherlands in 2015, relative to 2004 and 2010, with changes in other European countries and regions. DESIGN: Descriptive population-wide study. METHOD: Data from 32 European countries and regions within the Euro-Peristat registration area were analysed. These countries and regions were grouped into: the Netherlands, Scandinavia, Western Europe and Eastern Europe. International differences in registration and policies were taken into account by using rates from 28 weeks gestation for foetal mortality and for 24 weeks gestation and beyond for neonatal mortality. Ranking was based on individual countries and regions. RESULTS: Foetal mortality decreased by 24% in the Netherlands, from 2.9 per 1,000 births in 2010 to 2.2 per 1,000 births in 2015; neonatal mortality decreased by 9%, from 2.2 to 2.0 per 1,000 live births. Perinatal mortality (the sum of foetal mortality and neonatal mortality) decreased by 18% from 5.1 to 4.2 per 1,000 births. The Netherlands moved from the 18th place in the European ranking in 2004 to the 10th place in 2015. CONCLUSION: Foetal, neonatal and perinatal mortality in the Netherlands decreased in 2015 when compared with 2004 and 2010. The country's position in the European ranking also improved. Explanations for this decrease are related to changes in the areas of organisation of care, population and risk factors. When mortality rates in other European countries and regions - particularly Scandinavia - are considered there is room for further improvement.

The Public Health Status and Foresight report 2014: Four normative perspectives on a healthier Netherlands in 2040.

Policy-oriented foresight reports aim to inform and advise decision-makers. In value-laden areas such as public health and healthcare, deliberative scenario methods are clearly needed. For the sixth Dutch Public Health Status and Forecasts-report (PHSF-2014), a new approach of co-creation was developed aiming to incorporate different societal norms and values in the description of possible future developments. The major future trends in the Netherlands were used as a starting point for a deliberative dialogue with stakeholders to identify the most important societal challenges for public health and healthcare. Four societal challenges were identified: 1) To keep people healthy as long as possible and cure illness promptly, 2) To support vulnerable people and enable social participation, 3) To promote individual autonomy and freedom of choice, and 4) To keep health care affordable. Working with stakeholders, we expanded these societal challenges into four corresponding normative scenarios. In a survey the normative scenarios were found to be recognizable and sufficiently distinctive. We organized meetings with experts to explore how engagement and policy strategies in each scenario would affect the other three societal challenges. Possible synergies and trade-offs between the four scenarios were identified. Public health foresight based on a business-as-usual scenario and normative scenarios is clearly practicable. The process and the outcomes support and elucidate a wide range of strategic discussions in public health.

Key features of an EU health information system: a concept mapping study.

BACKGROUND: Despite the acknowledged value of an EU health information system (EU-HISys) and the many achievements in this field, the landscape is still heavily fragmented and incomplete. Through a systematic analysis of the opinions and valuations of public health stakeholders, this study aims to conceptualize key features of an EU-HISys. METHODS: Public health professionals and policymakers were invited to participate in a concept mapping procedure. First, participants (N = 34) formulated statements that reflected their vision of an EU-HISys. Second, participants (N = 28) rated the relative importance of each statement and grouped conceptually similar ones. Principal Component and cluster analyses were used to condense these results to EU-HISys key features in a concept map. The number of key features and the labelling of the concept map were determined by expert consensus. RESULTS: The concept map contains 10 key features that summarize 93 statements. The map consists of a horizontal axis that represents the relevance of an 'organizational strategy', which deals with the 'efforts' to design and develop an EU-HISys and the 'achievements' gained by a functioning EU-HISys. The vertical axis represents the 'professional orientation' of the EU-HISys, ranging from the 'scientific' through to the 'policy' perspective. The top ranking statement expressed the need to establish a system that is permanent and sustainable. The top ranking key feature focuses on data and information quality. CONCLUSIONS: This study provides insights into key features of an EU-HISys. The results can be used to guide future planning and to support the development of a health information system for Europe.

[Decline in foetal and neonatal mortality in the Netherlands: comparison with other Euro-Peristat countries between 2004 and 2010]. / Afname van foetale en neonatale sterfte in Nederland: vergelijking met andere Euro-Peristat-landen in 2004 en 2010.

OBJECTIVE: To compare the change in foetal and neonatal mortality in the Netherlands between 2004 and 2010 with the change in other European countries. DESIGN: Descriptive, population-based study. METHOD: Data from the Euro-Peristat project on foetal and neonatal mortality in European countries were analysed for changes between 2004 and 2010. The Netherlands was compared with 26 other European countries and regions. International differences in registration and policy were taken into account using figures on foetal mortality starting at 28 weeks of pregnancy and neonatal mortality starting at 24 weeks of pregnancy. RESULTS: Foetal mortality in the Netherlands declined by 33%, from 4.3 per 1000 births in 2004 to 2.9 per 1000 births in 2010 while neonatal mortality declined by 21%, from 2.8 per 1000 live births in 2004 to 2.2 per 1000 live births in 2010. Perinatal mortality (the sum of foetal mortality and neonatal mortality) declined by 27%, from 7.0 to 5.1 per 1000. In the European ranking, the Netherlands shifted from 23rd to 13th place for foetal mortality; it remained the same for neonatal mortality (15th of 22 countries) and virtually the same for perinatal mortality (from 15th to 13th of 22 countries). CONCLUSIONS: Both foetal mortality at 28+ weeks and neonatal mortality at 24+ weeks declined in the Netherlands between 2004 and 2010. However, the relatively unfavourable position of the Netherlands in the European ranking for foetal and neonatal mortality improved only for foetal mortality. In that respect, the Netherlands holds an average position.

Term perinatal mortality audit in the Netherlands 2010-2012: a population-based cohort study.

OBJECTIVE: To assess the implementation and first results of a term perinatal internal audit by a standardised method. DESIGN: Population-based cohort study. SETTING: All 90 Dutch hospitals with obstetric/paediatric departments linked to community practices of midwives, general practitioners in their attachment areas, organised in perinatal cooperation groups (PCG). POPULATION: The population consisted of 943 registered term perinatal deaths occurring in 2010-2012 with detailed information, including 707 cases with completed audit results. MAIN OUTCOME MEASURES: Participation in the audit, perinatal death classification, identification of substandard factors (SSF), SSF in relation to death, conclusive recommendations for quality improvement in perinatal care and antepartum risk selection at the start of labour. RESULTS: After the introduction of the perinatal audit in 2010, all PCGs participated. They organised 645 audit sessions, with an average of 31 healthcare professionals per session. Of all 1102 term perinatal deaths (2.3/1000) data were registered for 86% (943) and standardised anonymised audit results for 64% (707). In 53% of the cases at least one SSF was identified. Non-compliance to guidelines (35%) and deviation from usual professional care (41%) were the most frequent SSF. There was a (very) probable relation between the SSF and perinatal death for 8% of all cases. This declined over the years: from 10% (n=23) in 2010 to 5% (n=10) in 2012 (p=0.060). Simultaneously term perinatal mortality decreased from 2.3 to 2.0/1000 births (p<0.00001). Possibilities for improvement were identified in the organisation of care (35%), guidelines or usual care (19%) and in documentation (15%). More pregnancies were antepartum selected as high risk, 70% in 2010 and 84% in 2012 (p=0.0001). CONCLUSIONS: The perinatal audit is implemented nationwide in all obstetrical units in the Netherlands in a short time period. It is possible that the audit contributed to the decrease in term perinatal mortality.

Towards quality criteria for regional public health reporting: concept mapping with Dutch experts.

BACKGROUND: In the Netherlands, municipal health assessments are carried out by 28 Regional Health Services, serving 418 municipalities. In the absence of guidelines, regional public health reports were developed in two pilot regions on the basis of the model and experience of national health reporting. Though they were well received and positively evaluated, it was not clear which specific characteristics determined 'good public health reporting'. Therefore, this study was set up to develop a theoretical framework for the quality of regional public health reporting in The Netherlands. METHODS: Using concept mapping as a standardized tool for conceptualization, 35 relevant reporting experts formulated short statements in two different brainstorming sessions, describing specific quality criteria of regional public health reports. After the removal of duplicates, the list was supplemented with international criteria, and the statements were sent to each participant for rating and sorting. The results were processed statistically and represented graphically. The output was discussed and interpreted, leading to the final concept map. RESULTS: The final concept map consisted of 97 criteria, grouped into 13 clusters, and plotted in two dimensions: a 'product' dimension, ranging from 'production' to 'content', and a 'context' dimension, ranging from 'science' to 'policy'. The three most important clusters were: (i) 'solution orientation', (ii) 'policy relevance' and (iii) 'policy impact'. CONCLUSION: This study provided a theoretical framework for the quality of regional public health reporting, indicating relevant domains and criteria. Further work should translate domains and criteria into operational indicators for evaluating regional public health reports.

European community health monitoring: the EUPHIX-model.

AIMS: On 20 June 2008, the EUPHIX website (www.euphix.org) was officially launched. EUPHIX aims to provide policy relevant health information, data and knowledge for policy makers, public health experts and educated lay people in the European Union (EU). The project was carried out by a partnership of European health reporting experts. METHODS: The conceptual structure of EUPHIX resembles the one used for the ECHI-indicator framework, but adds health policies. EUPHIX includes texts (EUphacts) next to indicator data, as well as links to organizations, data and literature. Other contributions, called EUphocus, address broader agenda issues, such as mental health and health inequalities. Some EUphocus contributions contain summarized outcomes of EU projects. In this sense, EUPHIX has a European platform function as well. Behind the surface of the EUPHIX website lies a complex internet application, including databases, i.e. for indicator data, for internal and external web links and for references and definitions. This back-office contains a Content Management System that guides an editorial process allowing the differentiation of the roles of authors, reviewers and content editors. User oriented functionalities include different ways to interactively manipulate data for personal presentation needs. Some EUphacts are linked to the Health-EU Portal. RESULTS: EUPHIX is drawing increasing numbers of visitors and has the potential to become the nucleus of a health monitoring system for the EU. However, current financing practice puts serious limits to its sustainability. CONCLUSIONS: The conclusion is that the EUPHIX model launched in June 2008 is integrating data, information and knowledge into a new type of Health Information System. The EUPHIX model is proposed to be the future model for EU health reporting.