Assessing European national health information systems in peer review format: lessons learnt.

BACKGROUND: Systematic assessments of a country's health information system (HIS) help identify strengths and weaknesses and may stimulate actions for improvement. They represent a capacity-building process for the country assessed as well as for the assessor. The joint action on HISs (InfAct) developed a peer-to-peer assessment methodology adapting an established WHO support tool. The aim of this study is to identify lessons learnt and the added value of the InfAct peer assessment for the assessors. METHODS: A qualitative evaluation of the peer HIS assessment was performed based on 12 semi-structured interviews: nine interviews were carried out with assessors from nine participating countries, and three with an observer (present during assessments). The interviews were carried out between May 2019 and January 2020. Interviews were analysed using qualitative content analysis. RESULTS: The interviews revealed the experiences of the assessors mainly occurred in five areas: assessors strengthened their understanding of what a population-based HIS is; they strengthened their understanding of how a HIS operates in different countries; they learnt how to carry out a HIS assessment; they strengthened their organization, communication, negotiation and reporting skills and they strengthened the networks in health information within and between countries. CONCLUSION: Since the assessors are key personnel in their respective national health systems, the impact of the assessment is not limited to the assessor alone but may extend to stakeholders in their country. The deployment of the InfAct HIS peer assessment, anchored in systematic HIS capacity building across European countries, is recommended.

Opportunities for a population-based cohort in Belgium.

Population-based cohorts allow providing answers to a wide range of policy-relevant research questions. In Belgium, existing cohort-like initiatives are limited by their focus on specific population groups or specific topics, or they lack a true longitudinal design. Since 2016, consultations and deliberative processes have been set up to explore the opportunities for a population-based cohort in Belgium. Through these processes, several recommendations emerged to pave the way forward - i.e., to facilitate the establishment of administrative linkages, increase digitalisation, secure long-term financial and organisational efforts, establish a consortium of the willing, and identify and tackle ethical and legal bottlenecks. This comment summarizes these recommendations, as these opportunities should be explored in depth to consolidate the existing collaborations between different stakeholders, and refers to current initiatives that can further facilitate the establishment of a Belgian population-based cohort and, more generally, administrative and health data linkage and reuse for research and policy-making.

The InfAct proposal for a sustainable European health information infrastructure on population health: the Distributed Infrastructure on Population Health (DIPoH).

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 as impacted by COVID-19. CONCLUSIONS: The sustainability plan received wide support from Member States and was recognized to have an added value at EU level. Nevertheless, there were several aspects which still need to be considered for the near future such as: (i) a commitment of stable financial and political support by Member States (MSs), (ii) the availability of resources at regional, national and European level to deal with innovations, and (iii) a more direct involvement from EU and international institutions such as the European Centre for Disease Prevention and Control (ECDC), the World Health Organization (WHO) and the Organisation for Economic Cooperation and Development OECD for providing support and sustainable contributions.

Capacity building in European health information systems: the InfAct peer assessment methodology.

BACKGROUND: A Health Information System (HIS) assessment is an evaluation of the functioning of the main elements that compose a national HIS. Assessors from nine countries performed peer assessments of each other's national HIS in the Joint Action on Health Information (InfAct). The aim of this study is to evaluate the advantages and disadvantages of the InfAct peer assessment methodology as well as the different steps involved in this assessment process. METHODS: Each peer assessment included a preparatory desk report, a country visit with semi-structured interviews with local stakeholders, a final report and a follow-up stakeholder meeting. A qualitative content analysis of the peer HIS assessment was performed based on 12 semi-structured interviews. RESULTS: The main advantage of the assessments is its informal atmosphere, high degree of objectiveness and its networking opportunities. Disadvantages are its informal request format and setting for recommendation uptake. The peer assessment helped the assessors to broaden their understanding of the assessed and their own HISs, to gain knowledge on how to carry out an HIS assessment and to practice their organization, communication, reporting and negotiation skills. All steps of the HIS assessment are essential and each contributes to the enriching experience of the participants. CONCLUSION: The InfAct peer HIS assessment methodology strengthened capacity in national HISs by building up the knowledge and expertise in participating countries and as such addressed health information inequalities. This study confirms the value and relatively easy to implement methodology, and therefore recommends its wide and more systematic application across Europe.

Prioritizing health information for national health reporting - a Delphi study of the Joint Action on Health Information (InfAct).

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 heterogeneity of national public health systems in European countries. Mapping, sharing and ranking prioritization methods and procedures for "good practices" provides a meaningful basis for expert knowledge exchange on HI development. We recommend to make this process part of a future sustainable EU health information system and to use the information gathered in this project to initiate the development of a guidance "Good Practice HI Prioritization" among EU Member States and associated countries.

Mapping European research networks providing health data: results from the InfAct Joint Action on health information.

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.

Integrating technical and political views for a sustainable European Distributed Infrastructure on Population Health.

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 outcomes extending the information provided in the Fact-Sheets; followed by a non-structured interaction, exchange of information, discussion and suggestions by the MSs representatives. The outcomes of the non-structured discussions were collected in Minutes of the TD and AoM meetings, and the final version was obtained with the consensus of all participants. Additionally, structured letters of political support were provided to the AoM representatives, for them to consider providing their MS written support for DIPoH. RESULTS: NTE, within the TDs, considered that DIPoH was useful for technical mutual learning and cooperation among and within countries; although they considered that the technical feasibility to uptake InfAct deliverables at the national and EU level was complex. The AoM focused on political support, resources, and expected MSs returns. The AoM representatives agreed in the interest of setting up an integrated and sustainable HI infrastructure and they considered DIPoH to be well-articulated and defined; although, some of them, expressed some barriers for providing DIPoH political support. The AoM representatives stated that the AoM is the most suitable way to inform EU MSs/ACs about future advances of DIPoH. Both boards provided valuable feedback to develop this infrastructure. Eleven countries and sixteen institutions supported the proposal, either by letters of political support or by signing the Memorandum of Understandings (MoU) and three countries, additionally, provided expression of financial commitment, for DIPoH to be added to the ESFRI 2021 roadmap. CONCLUSIONS: TDs and AoM were key forums to develop, advise, advocate and provide support for a sustainable European research infrastructure for Population Health.

Identifying common enablers and barriers in European health information systems.

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.

Making the case for strong health information systems during a pandemic and beyond.

BACKGROUND: The Sars-CoV-2 pandemic exacerbates existing inequalities across health care systems globally, both within countries and between countries. It also highlights, like no other crisis before, existing weaknesses in health information systems (HIS). This article summarizes these key challenges for HIS in times of a pandemic and beyond, with a focus on European countries. It builds on the experiences of a large consortium representing HIS experts in key positions in national public health or similar institutes across Europe. METHODS: Data were collected in bi-weekly conference calls organized by the InfAct project between February and June 2020. Emerging themes were clustered and analysed around a WHO framework for health information systems (HIS). We analyse strengths of HIS at two levels: (i) dealing with health information directly, and (ii) dealing with other parts of information systems that allow for a holistic assessment of the pandemic (including health-related aspects). RESULTS: The analysis highlights the need for capacity-building in HIS before a pandemic hits, the relevance of going beyond health information only related to health care but taking a broader perspective (e.g. on vulnerable groups), the need for strong reporting systems on staffing numbers and in primary care. Further, data linkage emerges as a crucial precondition to identify unmet needs for essential health care services in a timely manner. Finally, room for innovation and digitalisation is key to be able to react flexibly in times of crisis. Trust for health information stakeholders is another important factor to create strong HIS. CONCLUSIONS: The strengths and shortcomings of European HIS that have been observed during the COVID-19 crisis highlight the need for strong HIS beyond the crisis. The experiences reported leave as a central message that successful reactions to the pandemic are (also) grounded in strong HIS that ultimately not only benefit the health of the population but also create a number of economic and psycho-social benefits. Strong data reporting schemes may also support fine-tuning of containment measures during a pandemic as well as transition phases.

Towards a sustainable EU health information system infrastructure: A consensus driven approach.

BACKGROUND: Health information in the EU is characterised by diversity and fragmentation of health information infrastructures. A well-defined and sustainable EU health information system infrastructure is lacking. The potential of a European Research Infrastructure Consortium on Health Information for Research and Evidence-based Policy (HIREP-ERIC) to take up this role is investigated. METHODS: Two working groups, a BRIDGE Health Steering Committee and the European Commission's Drafting Group of the Expert Group on Health Information, discussed the technical and scientific description of the HIREP-ERIC through a consensus-driven modified Delphi technique. RESULTS: Consensus was reached on three aspects of the HIREP-ERIC. First, it was defined as an infrastructure that facilitates interaction of networks and experts in health information by providing central governance and a more permanent collaboration. Second, the infrastructure should be distributed, with a central hub coordinating the operation of distributed networks. Third, it should provide easy access to high quality and comparable data for purposes of research and policy making, and focus its activities around generating, managing, exchanging and translating health information. CONCLUSION: A momentum has been created where representatives from 16 European countries agreed on the HIREP-ERIC as a pragmatic bottom-up approach to strengthen the current EU health information landscape. A Member States' commitment is needed at senior political level to make this consensus operational.

National public health system responses to diabetes and other important noncommunicable diseases : Background, goals, and results of an international workshop at the Robert Koch Institute.

Diabetes mellitus and other noncommunicable diseases (NCDs) represent an emerging global public health challenge. In Germany, about 6.7 million adults are affected by diabetes according to national health surveys, including 1.3 million with undiagnosed diabetes. Complications of diabetes result in an increasing burden for individuals and society as well as enormous costs for the health care system. In response, the Federal Ministry of Health commissioned the Robert Koch Institute (RKI) to implement a diabetes surveillance system and the Federal Center for Health Education (BZgA) to develop a diabetes prevention strategy. In a two-day workshop jointly organized by the RKI and the BZgA, representatives from public health institutes in seven countries shared their expertise and knowledge on diabetes prevention and surveillance. Day one focused on NCD surveillance systems and emphasized both the strengthening of sustainable data sources and the timely and targeted dissemination of results using innovative formats. The second day focused on diabetes prevention strategies and highlighted the importance of involving all relevant stakeholders in the development process to facilitate its acceptance and implementation. Furthermore, the effective translation of prevention measures into real-world settings requires data from surveillance systems to identify high-risk groups and evaluate the effect of measures at the population level based on analyses of time trends in risk factors and disease outcomes. Overall, the workshop highlighted the close link between diabetes prevention strategies and surveillance systems. It was generally stated that only robust data enables effective prevention measures to encounter the increasing burden from diabetes and other NCDs.

The use of the global activity limitation Indicator and healthy life years by member states and the European Commission.

BACKGROUND: In 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. METHODS: In 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. RESULTS: The 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. CONCLUSION: HLY 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.

Measuring disability: a systematic review of the validity and reliability of the Global Activity Limitations Indicator (GALI).

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.

An integrated and sustainable EU health information system: national public health institutes' needs and possible benefits.

BACKGROUND: Although sound data and health information are at the basis of evidence-based policy-making and research, still no single, integrated and sustainable EU-wide public health monitoring system or health information system exists. MAIN BODY: BRIDGE Health is working towards an EU health information and data generation network covering major EU health policy areas. A stakeholder consultation with national public health institutes was organised to identify the needs to strengthen the current EU health information system and to identify its possible benefits. Five key issues for improvement were identified: (1) coherence, coordination and sustainability; (2) data harmonization, collection, processing and reporting; (3) comparison and benchmarking; (4) knowledge sharing and capacity building; and (5) transferability of health information into evidence-based policy making. The vision of an improved EU health information system was formulated and the possible benefits in relation to six target groups. CONCLUSIONS: Through this consultation, BRIDGE Health has identified the continuous need to strengthen the EU health information system. A better system is about sustainability, better coordination, governance and collaboration among national health information systems and stakeholders to jointly improve, harmonise, standardise and analyse health information. More and better sharing of this comparable health data allows for more and better comparative health research, international benchmarking, national and EU-wide public health monitoring. This should be developed with the view to provide the tools to fight both common and individual challenges faced by the Members States and their politicians.

A Qualitative Approach to a Better Understanding of the Problems Underlying Drug Shortages, as Viewed from Belgian, French and the European Union's Perspectives.

The problem of drug shortages has been reported worldwide, gaining prominence in multiple domains and several countries in recent years. The aim of the study was to analyze, characterise and assess this problem in Belgium and France, while also adopting a wider perspective from the European Union. A qualitative methodological approach was employed, including semi-structured interviews with the representatives of respective national health authorities, pharmaceutical companies and wholesalers, as well as hospital and community pharmacists. The research was conducted in early 2014. Four themes, which were identified through the interviews, were addressed in the paper, i.e. a) defining drug shortages, b) their dynamics and perception, c) their determinants, d) the role of the European and national institutions in coping with the problem. Three groups of determinants of drug shortages were identified throughout this study: manufacturing problems, distribution and supply problems, and problems related to economic aspects. Currently, the Member States of the European Union are striving to resolve the problem very much on their own, although a far more focused and dedicated collaboration may well prove instrumental in coping with drug shortages throughout Europe more effectively. To the best of the authors' knowledge, this is the first qualitative study to investigate the characteristics, key determinants, and the problem drivers of drug shortages, focusing on this particular group of countries, while also adopting the European Union's perspective.

Association of left ventricular diastolic function with systolic dyssynchrony: a population study.

AIMS: Left ventricular (LV) (dys)synchrony has an important impact on LV function and structure. Our study aimed to describe the distribution and determinants of LV mechanical delay indexes in the general population and to assess an association of different Doppler indexes reflecting LV diastolic function with LV mechanical delay indexes. METHODS AND RESULTS: In 200 subjects enrolled in a family-based population study (46.5% women; mean age, 57.9; 48% hypertensive), we performed echocardiography with tissue synchronization imaging (TSI) and two-dimensional speckle tracking. We measured the maximum difference in time to peak systolic velocity between any 2 of 12 LV segments (Ts-max); the standard deviation of time to peak systolic velocity of 12 segments (Ts-sd); the difference in time to peak systolic velocity and strain between septal and lateral LV walls and the strain delay index in septal and lateral walls [septal and lateral (SDI)]. In univariable and multivariable regression analyses, TSI indexes and lateral SDI independently increased with age (P ≤ 0.027) and body mass index (P ≤ 0.010). Ts-max and Ts-sd also increased with female sex (P ≤ 0.0002) and decreased with heart rate (P ≤ 0.0004). Septal SDI only increased with female sex (P < 0.0001). Among the Doppler indexes of LV diastolic function, only E/e' was significantly and positively associated with TSI indexes (P ≤ 0.037) and lateral SDI (P = 0.0026), but not with septal SDI (P = 0.69). In participants with advanced stage of LV diastolic dysfunction, TSI indexes were prolonged compare with subjects with normal LV diastolic function (P ≤ 0.002). CONCLUSION: We demonstrated that in unselected subjects LV diastolic dysfunction was associated with mechanical LV dyssynchrony as assessed by echocardiography.