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European countries possess unique health information systems (HISs) and face similar health system challenges. Investigating common enablers and barriers across Europe pinpoint where HISs need improvements to address these challenges. This study aims to identify common enablers and barriers for optimal functioning of HISs across the European Union and associated countries, and to interpret what this means for the further development of HISs in Europe. A qualitative thematic analysis was carried out based on nine countries HISs assessments. Two main observations are made. Firstly, regardless of the differences between HISs, each HIS had its strengths and weaknesses and often the same barriers and enablers arose. Secondly, barriers were identified in all HIS areas. The five most important barriers are (i) fragmentation of data sources, limited accessibility, use and re-use of data, (ii) barriers in the implementation of EHR-systems, (iii) governance issues related to unclear responsibilities, discontinuous financing and weak intra- and inter-sectorial collaboration, (iv) legal gaps and General Data Protection Regulation (mis)interpretation, and (v) limited skilled staff. The enablers identified in this study lead to potential solutions to address these. Solutions can be implemented by national initiatives, but there is considerable added value in a joint European approach. Several international initiatives provide opportunities to improve HISs, but these need to be strengthened and better geared towards tackling the identified barriers.

Background: GALI or Global Activity Limitation Indicator is a global survey instrument measuring participation restriction. GALI is the measure underlying the European indicator Healthy Life Years (HLY). Gali has a substantial policy use within the EU and its Member States. The objective of current paper is to bring together what is known from published manuscripts on the validity and the reliability of GALI. Methods: Following the PRISMA guidelines, two search strategies (PUBMED, Google Scholar) were combined to identify manuscripts published in English with publication date 2000 or beyond. Articles were classified as reliability studies, concurrent or predictive validity studies, in national or international populations. Results: Four cross-sectional studies (of which 2 international) studied how GALI relates to other health measures (concurrent validity). A dose-response effect by GALI severity level on the association with the other health status measures was observed in the national studies. The 2 international studies (SHARE, EHIS) concluded that the odds of reporting participation restriction was higher in subjects with self-reported or observed functional limitations. In SHARE, the size of the Odds Ratio's (ORs) in the different countries was homogeneous, while in EHIS the size of the ORs varied more strongly. For the predictive validity, subjects were followed over time (4 studies of which one international). GALI proved, both in national and international data, to be a consistent predictor of future health outcomes both in terms of mortality and health care expenditure. As predictors of mortality, the two distinct health concepts, self-rated health and GALI, acted independently and complementary of each other. The one reliability study identified reported a sufficient reliability of GALI. Conclusion: GALI as inclusive one question instrument fits all conceptual characteristics specified for a global measure on participation restriction. In none of the studies, included in the review, there was evidence of a failing validity. The review shows that GALI has a good and sufficient concurrent and predictive validity, and reliability.

International audience ; BackgroundIn 2005, the European Union (EU) started to use a disability-free life expectancy, known as Healthy Life Years (HLY), to monitor progress in the strategic European policies such as the 2000 Lisbon strategy. HLY are based on the underlying measure: the Global Activity Limitation Indicator (GALI). Twelve years after its implementation, this study aims to assess its current use in EU Member States and the European Commission.MethodsIn March 2017, a questionnaire was sent to 28 Member states and the European Commission. The questionnaire inquired how the GALI and HLY are used to set policy targets, in which surveys the GALI has been introduced since 2005, how the GALI and HLY are presented, and what the capacity in each country is to investigate the GALI and HLY.ResultsThe survey was answered by 22 Member States and by the Commission. HLY are often used to set targets and develop strategies in health such as national health plans. Analysis of HLY has even led to policy change. In some countries, HLY have become the main indicator for health, gaining more importance than life expectancy. More recently, the GALI and HLY have also been used for policy targets outside the health sector such as in the area of pension and retirement age or in the context of sustainable development. Regarding surveys, the GALI is mostly obtained from the EU-SILC, SHARE and EHIS, but is also increasingly introduced in national surveys. National health reporting systems usually present HLY on their national statistics websites. Most countries have up to three specialists working on the GALI and HLY, which has been consistent through time. Others have increased their capacity over various institutions.ConclusionHLY is an indicator that is systematically used to monitor health developments in most EU countries. The SHARE, EU-SILC and EHIS are commonly used to assess HLY through the GALI. The results are then described in reports and presented on national statistics websites and used in different policy ...

International audience ; BackgroundIn 2005, the European Union (EU) started to use a disability-free life expectancy, known as Healthy Life Years (HLY), to monitor progress in the strategic European policies such as the 2000 Lisbon strategy. HLY are based on the underlying measure: the Global Activity Limitation Indicator (GALI). Twelve years after its implementation, this study aims to assess its current use in EU Member States and the European Commission.MethodsIn March 2017, a questionnaire was sent to 28 Member states and the European Commission. The questionnaire inquired how the GALI and HLY are used to set policy targets, in which surveys the GALI has been introduced since 2005, how the GALI and HLY are presented, and what the capacity in each country is to investigate the GALI and HLY.ResultsThe survey was answered by 22 Member States and by the Commission. HLY are often used to set targets and develop strategies in health such as national health plans. Analysis of HLY has even led to policy change. In some countries, HLY have become the main indicator for health, gaining more importance than life expectancy. More recently, the GALI and HLY have also been used for policy targets outside the health sector such as in the area of pension and retirement age or in the context of sustainable development. Regarding surveys, the GALI is mostly obtained from the EU-SILC, SHARE and EHIS, but is also increasingly introduced in national surveys. National health reporting systems usually present HLY on their national statistics websites. Most countries have up to three specialists working on the GALI and HLY, which has been consistent through time. Others have increased their capacity over various institutions.ConclusionHLY is an indicator that is systematically used to monitor health developments in most EU countries. The SHARE, EU-SILC and EHIS are commonly used to assess HLY through the GALI. The results are then described in reports and presented on national statistics websites and used in different policy settings. Expertise to analyse the GALI and HLY is available in most countries.

BACKGROUND: Health information (HI) strategies exist in several EU Member States, however, they mainly focus on technical issues and improving governance rather than on content-related priority setting. There is also little research available about national prioritization processes underlying HI development for policy support in the EU. The aim of this study was to broaden the knowledge base on HI prioritization strategies and to encourage expert exchange towards good practice models. A specific focus was put on HI produced for national health reporting, this being a crucial tool for policy advice. METHODS: We conducted a literature search to identify published and grey literature on national HI prioritization. This was followed by a two-round Policy Delphi study, where we explored which processes and methods exist in EU Member States and associated countries for the prioritization of HI collection. In the first round, information about these processes was gathered in semi-structured questions; in the second round, participants were asked to rank the identified approaches for desirability and feasibility. The survey was conducted online; participants were recruited from the membership of the Joint Action on Health Information (InfAct – Information for Action). RESULTS: 119 experts were contacted, representing 40 InfAct partner institutions in 28 EU Member States and associated countries. Of these, 28 experts responded fully or partially to the first round, and six to the second round. In the first round, more than half of the respondents reported the existence of structured HI prioritization processes in their countries. To prioritize HI, a clear preference was given in the second round for a formal, horizontal process which includes different experts and stakeholders. National public health institutes were named desirable key stakeholders in this process, and also desirable and feasible coordinators for stakeholder coordination. CONCLUSION: Health information prioritization methods and procedures reflect the ...

BACKGROUND: Research networks offer multidisciplinary expertise and promote information exchange between researchers across Europe. They are essential for the European Union's (EU) health information system as providers of health information and data. The aim of this mapping exercise was to identify and analyze EU research networks in terms of health data collection methods, quality assessment, availability and accessibility procedures. METHODS: A web-based search was performed to identify EU research networks that are not part of international organizations (e.g., WHO-Europe, OECD) and are involved in collection of data for health monitoring or health system performance assessment. General characteristics of the research networks (e.g., data sources, representativeness), quality assessment procedures, availability and accessibility of health data were collected through an ad hoc extraction form. RESULTS: Fifty-seven research networks, representative at national, international or regional level, were identified. In these networks, data are mainly collected through administrative sources, health surveys and cohort studies. Over 70% of networks provide information on quality assessment of their data collection procedures. Most networks share macrodata through articles and reports, while microdata are available from ten networks. A request for data access is required by 14 networks, of which three apply a financial charge. Few networks share data with other research networks (8/49) or specify the metadata-reporting standards used for data description (9/49). CONCLUSIONS: Improving health information and availability of high quality data is a priority in Europe. Research networks could play a major role in tackling health data and information inequalities by enhancing quality, availability, and accessibility of health data and data sharing across European networks. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13690-021-00766-2.

Background: Non-Communicable diseases (NCD) are the main contributors to mortality and burden of disease. There is no infrastructure in Europe that could provide health information (HI) on Public Health monitoring and Health Systems Performance (HSP) for research and evidence-informed decision-making. Moreover, there was no EU and European Economic Area Member States (EU/EEA MSs) general consensus, on developing this initiative and guarantee its sustainability. The aim of this study is to analyze the integration of technical and political views made by the Joint Action on Health Information (InfAct; Information for Action) and the results obtained from those activities, in terms of advice and national and institutional support to develop an integrated and sustainable European Distributed Infrastructure on Population Health (DIPoH) for research and evidence-informed policy-making. Methods: InfAct established two main boards, the Technical Dialogues (TDs) and the Assembly of Members (AoM), to provide a platform for discussion with EU/EEA MSs to establish a sustainable infrastructure for HI: 1) The TDs were composed by national technical experts (NTE) with the aim to discuss and provide feedback about scientific aspects, feasibility and EU-added value of the infrastructure proposed by InfAct. 2) The AoM gathered country representatives from Ministries of Health and Research at the highest political level, with the aim of providing policy-oriented advice for the future political acceptance, support, implementation, and development of InfAct's outcomes including DIPoH. The documentation provided for the meetings consisted in Fact-Sheets, where the main results, new methods and proposals were clearly exposed for discussion and assessment; altogether with more extended information of the DIPoH. The documentation was provided to national representatives within one more before each TD and AoM meeting. The Agenda and methodological approaches for each TD and AoM meeting consisted in the presentations of the InfAct ...

BACKGROUND: Non-Communicable diseases (NCD) are the main contributors to mortality and burden of disease. There is no infrastructure in Europe that could provide health information (HI) on Public Health monitoring and Health Systems Performance (HSP) for research and evidence-informed decision-making. Moreover, there was no EU and European Economic Area Member States (EU/EEA MSs) general consensus, on developing this initiative and guarantee its sustainability. The aim of this study is to analyze the integration of technical and political views made by the Joint Action on Health Information (InfAct; Information for Action) and the results obtained from those activities, in terms of advice and national and institutional support to develop an integrated and sustainable European Distributed Infrastructure on Population Health (DIPoH) for research and evidence-informed policy-making. METHODS: InfAct established two main boards, the Technical Dialogues (TDs) and the Assembly of Members (AoM), to provide a platform for discussion with EU/EEA MSs to establish a sustainable infrastructure for HI: 1) The TDs were composed by national technical experts (NTE) with the aim to discuss and provide feedback about scientific aspects, feasibility and EU-added value of the infrastructure proposed by InfAct. 2) The AoM gathered country representatives from Ministries of Health and Research at the highest political level, with the aim of providing policy-oriented advice for the future political acceptance, support, implementation, and development of InfAct's outcomes including DIPoH. The documentation provided for the meetings consisted in Fact-Sheets, where the main results, new methods and proposals were clearly exposed for discussion and assessment; altogether with more extended information of the DIPoH. The documentation was provided to national representatives within one more before each TD and AoM meeting. The Agenda and methodological approaches for each TD and AoM meeting consisted in the presentations of the InfAct ...

Funding Information: We gratefully acknowledge the contribution of all beneficiaries and stakeholders from the Joint Action Project 801553 Information for Action InfAct. Likewise, we acknowledge the contributions of the country representatives of the Assembly of Members and the Technical Dialogues from the EU/EEA MSs that participated in the InfAct Project. Publisher Copyright: © 2022, The Author(s). ; Background: Non-Communicable diseases (NCD) are the main contributors to mortality and burden of disease. There is no infrastructure in Europe that could provide health information (HI) on Public Health monitoring and Health Systems Performance (HSP) for research and evidence-informed decision-making. Moreover, there was no EU and European Economic Area Member States (EU/EEA MSs) general consensus, on developing this initiative and guarantee its sustainability. The aim of this study is to analyze the integration of technical and political views made by the Joint Action on Health Information (InfAct; Information for Action) and the results obtained from those activities, in terms of advice and national and institutional support to develop an integrated and sustainable European Distributed Infrastructure on Population Health (DIPoH) for research and evidence-informed policy-making. Methods: InfAct established two main boards, the Technical Dialogues (TDs) and the Assembly of Members (AoM), to provide a platform for discussion with EU/EEA MSs to establish a sustainable infrastructure for HI: 1) The TDs were composed by national technical experts (NTE) with the aim to discuss and provide feedback about scientific aspects, feasibility and EU-added value of the infrastructure proposed by InfAct. 2) The AoM gathered country representatives from Ministries of Health and Research at the highest political level, with the aim of providing policy-oriented advice for the future political acceptance, support, implementation, and development of InfAct's outcomes including DIPoH. The documentation provided for the meetings ...

© 2022. The Author(s). ; BACKGROUND: In Europe, data on population health is fragmented, difficult to access, project-based and prone to health information inequalities in terms of availability, accessibility and especially in quality between and within countries. This situation is further exacerbated and exposed by the recent COVID-19 pandemic. The Joint Action on Health Information (InfAct) that builds on previous works of the BRIDGE Health project, carried out collaborative action to set up a sustainable infrastructure for health information in the European Union (EU). The aim of this paper is to present InfAct's proposal for a sustainable research infrastructure, the Distributed Infrastructure on Population Health (DIPoH), which includes the setup of a Health Information Portal on population health to be maintained beyond InfAct's time span. METHODS: The strategy for the proposal was based on three components: scientific initiatives and proposals to improve Health Information Systems (HIS), exploration of technical acceptability and feasibility, and finally obtaining high-level political support. The technical exploration (Technical Dialogues-TD) was assumed by technical experts proposed by the countries, and political guidance was provided by the Assembly of Members (AoM), which gathered representatives from Ministries of Health and Science of EU/EEA countries. The results from the AoM and the TD were integrated in the sustainability plan compiling all the major outputs of InfAct. RESULTS: The InfAct sustainability plan was organized in three main sections: a proposal of a new research infrastructure on population health (the DIPoH), new health information tools and innovative proposals for HIS, and a comprehensive capacity building programme. These activities were carried out in InfAct and are being further developed in the Population Health Information Research Infrastructure (PHIRI). PHIRI is a practical rollout of DIPoH facilitating and generating the best available evidence for research on health and ...

BACKGROUND: In Europe, data on population health is fragmented, difficult to access, project-based and prone to health information inequalities in terms of availability, accessibility and especially in quality between and within countries. This situation is further exacerbated and exposed by the recent COVID-19 pandemic. The Joint Action on Health Information (InfAct) that builds on previous works of the BRIDGE Health project, carried out collaborative action to set up a sustainable infrastructure for health information in the European Union (EU). The aim of this paper is to present InfAct's proposal for a sustainable research infrastructure, the Distributed Infrastructure on Population Health (DIPoH), which includes the setup of a Health Information Portal on population health to be maintained beyond InfAct's time span. METHODS: The strategy for the proposal was based on three components: scientific initiatives and proposals to improve Health Information Systems (HIS), exploration of technical acceptability and feasibility, and finally obtaining high-level political support. The technical exploration (Technical Dialogues—TD) was assumed by technical experts proposed by the countries, and political guidance was provided by the Assembly of Members (AoM), which gathered representatives from Ministries of Health and Science of EU/EEA countries. The results from the AoM and the TD were integrated in the sustainability plan compiling all the major outputs of InfAct. RESULTS: The InfAct sustainability plan was organized in three main sections: a proposal of a new research infrastructure on population health (the DIPoH), new health information tools and innovative proposals for HIS, and a comprehensive capacity building programme. These activities were carried out in InfAct and are being further developed in the Population Health Information Research Infrastructure (PHIRI). PHIRI is a practical rollout of DIPoH facilitating and generating the best available evidence for research on health and wellbeing of populations ...

Background: In Europe, data on population health is fragmented, difficult to access, project-based and prone to health information inequalities in terms of availability, accessibility and especially in quality between and within countries. This situation is further exacerbated and exposed by the recent COVID-19 pandemic. The Joint Action on Health Information (InfAct) that builds on previous works of the BRIDGE Health project, carried out collaborative action to set up a sustainable infrastructure for health information in the European Union (EU). The aim of this paper is to present InfAct's proposal for a sustainable research infrastructure, the Distributed Infrastructure on Population Health (DIPoH), which includes the setup of a Health Information Portal on population health to be maintained beyond InfAct's time span. Methods: The strategy for the proposal was based on three components: scientific initiatives and proposals to improve Health Information Systems (HIS), exploration of technical acceptability and feasibility, and finally obtaining high-level political support. The technical exploration (Technical Dialogues—TD) was assumed by technical experts proposed by the countries, and political guidance was provided by the Assembly of Members (AoM), which gathered representatives from Ministries of Health and Science of EU/EEA countries. The results from the AoM and the TD were integrated in the sustainability plan compiling all the major outputs of InfAct. Results: The InfAct sustainability plan was organized in three main sections: a proposal of a new research infrastructure on population health (the DIPoH), new health information tools and innovative proposals for HIS, and a comprehensive capacity building programme. These activities were carried out in InfAct and are being further developed in the Population Health Information Research Infrastructure (PHIRI). PHIRI is a practical rollout of DIPoH facilitating and generating the best available evidence for research on health and wellbeing of populations ...