COVID-19 health information system assessments in eight European countries: identified gaps, best practices and recommendations.

BACKGROUND: Global threats, such as the coronavirus disease 2019 (COVID-19) pandemic, have highlighted the critical importance of robust and well-functioning health information systems (HIS) in effectively addressing public health emergencies. To enhance the understanding and the functioning of such systems, it is crucial to perform HIS assessments. This article explores key gaps and identifies best practices in the COVID-19 HIS of eight European countries. Furthermore, it provides recommendations to strengthen European systems for better pandemic preparedness. METHODS: Assessments were carried out in eight European countries using an adapted version of the WHO support tool to strengthen HIS and the Joint Action on Health Information assessment tool. The assessments took place between January 2022 and April 2023. RESULTS: Four main themes emerged regarding the gaps and best practices identified in the various HIS: organizational, technical, legal and resources. The results of these assessments show different approaches implemented by countries to improve their HIS and respond to the demands of the pandemic. CONCLUSIONS: It is imperative for countries to draw valuable insights from the COVID-19 pandemic and strengthen their HIS. This involves the adaptation or development of pandemic preparedness plans, strengthening legislative framework for data sharing and privacy protection, promotion of data standards and international definitions and implementation of a unique person identifier. Additionally, countries will have to act in this post-pandemic era and integrate the newly developed systems and innovations into existing structures, maintain and develop trust by citizens through transparent communication and engage in infodemic management and address resource gaps in the workforce.

Strengthening national public health institutes: a systematic review on institution building in the public sector.

Introduction: Strong and efficient institutions are vital to the development of well-functioning governments and strong societies. The term "institution building" encompasses the creation, support, development, and strengthening of organizations and institutions. Still, there is little aggregated evidence on "institution building" considering a wider system-thinking approach, best practices, or development cooperation specifically in the field of public health. In 2007, the International Association of National Public Health Institutes (IANPHI) created a guiding Framework that countries may use for developing National Public Health Institutes (NPHIs). This Framework is currently being revised. Methods: In this context, we conducted a systematic review to facilitate this revision with recent evidence on institution building and its potential contribution to NPHI. We followed the PRISMA guidelines for systematic reviews, searching for relevant publications in seven scientific databases (Pubmed, VHL/LILACS, EconLit, Google Scholar, Web of Science, World Affairs Online, ECONBIZ) and four libraries (World Bank; European Health for All database of the World Health Organization European Region, WHO; Organization for Economic Cooperation and Development, OECD; and the African Union Common Repository). The search was carried out in October 2021. We used the "framework analysis" tool for systematically processing documents according to key themes. Results: As a result, we identified 3,015 records, of which we included 62 documents in the final review. This systematic review fills a major gap of aggregated information on institution building in the field of public health and National Public Health Institutes. It is to our knowledge the first systematic review of this kind. The overriding result is the identification and definition of six domains of institution building in the health sector: "governance," "knowledge and innovation," "inter-institutional cooperation," "monitoring and control," "participation," and "sustainability and context-specific adaptability." Discussion: Our results show that the described domains are highly relevant to the public health sector, and that managers and the scientific community recognize their importance. Still, they are often not applied consistently when creating or developing NPHIs. We conclude that organizations engaged in institution building of NPHIs, including IANPHI, may greatly benefit from state-of-the-art research on institution building as presented in this study.

Key lessons learnt from COVID-19 intra-action reviews in the Republic of Moldova, Montenegro, Kosovo and North Macedonia 2020-2021: a qualitative study.

OBJECTIVES: Our study described how the WHO intra-action review (IAR) methodology was operationalised and customised in three Western Balkan countries and territories and the Republic of Moldova and analysed the common key findings to inform analyses of the lessons learnt from the pandemic response. DESIGN: We extracted data from the respective IAR reports and performed a qualitative thematic content analysis to identify common (between countries and territories) and cross-cutting (across the response pillars) themes on best practices, challenges and priority actions. The analysis involved three stages, namely: extraction of data, initial identification of emerging themes and review and definition of the themes. SETTING: IARs were conducted in the Republic of Moldova, Montenegro, Kosovo and the Republic of North Macedonia between December 2020 and November 2021. The IARs were conducted at different time points relative to the respective pandemic trajectories (14-day incidence rate ranging from 23 to 495 per 100 000). RESULTS: Case management was reviewed in all the IARs, while the infection prevention and control, surveillance and country-level coordination pillars were reviewed in three countries. The thematic content analysis identified four common and cross-cutting best practices, seven challenges and six priority recommendations. Recommendations included investing in sustainable human resources and technical capacities developed during the pandemic, providing continuous capacity-building and training (with regular simulation exercises), updating legislation, improving communication between healthcare providers at all levels of healthcare and enhancing digitalisation of health information systems. CONCLUSIONS: The IARs provided an opportunity for continuous collective reflection and learning with multisectoral engagement. They also offered an opportunity to review public health emergency preparedness and response functions in general, thereby contributing to generic health systems strengthening and resilience beyond COVID-19. However, success in strengthening the response and preparedness requires leadership and resource allocation, prioritisation and commitment by the countries and territories themselves.

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.

Overview of national health reporting in the EU and quality criteria for public health reports - results of the Joint Action InfAct.

BACKGROUND: Health reporting shall provide up-to-date health-related data to inform policy-makers, researchers and the public. To this end, health reporting formats should be tailored to the needs and competencies of the target groups and provide comparable and high-quality information. Within the Joint Action on Health Information 'InfAct', we aimed at gaining an overview of health reporting practices in the EU Member States and associated countries, and developed quality criteria for the preparation of public health reports. The results are intended to facilitate making health information adequately available while reducing inequalities in health reporting across the EU. METHODS: A web-based desk research was conducted among EU Member States and associated countries to generate an overview of different formats of national health reporting and their respective target groups. To identify possible quality criteria for public health reports, an exploratory literature review was performed and earlier projects were analysed. The final set of criteria was developed in exchange with experts from the InfAct consortium. RESULTS: The web-based desk research showed that public health reports are the most frequently used format across countries (94%), most often addressed to scientists and researchers (51%), politicians and decision-makers (41%). However, across all reporting formats, the general public is the most frequently addressed target group. With regards to quality criteria for public health reports, the literature review has yielded few results. Therefore, two earlier projects served as main sources: the 'Evaluation of National and Regional Public Health Reports' and the guideline 'Good Practice in Health Reporting'from Germany. In collaboration with experts, quality criteria were identified and grouped into eight categories, ranging from topic selection to presentation of results, and compiled in a checklist for easy reference. CONCLUSION: Health reporting practices in the EU are heterogeneous across Member States. The assembled quality criteria are intended to facilitate the preparation, dissemination and access to better comparable high-quality public health reports as a basis for evidence-based decision-making. A comprehensive conceptual and integrative approach that incorporates the policy perspective would be useful to investigate which dissemination strategies are the most suitable for specific requirements of the targeted groups.

Improving National Intelligence for Public Health Preparedness: a methodological approach to finding local multi-sector indicators for health security.

The COVID-19 epidemic is the latest evidence of critical gaps in our collective ability to monitor country-level preparedness for health emergencies. The global frameworks that exist to strengthen core public health capacities lack coverage of several preparedness domains and do not provide mechanisms to interface with local intelligence. We designed and piloted a process, in collaboration with three National Public Health Institutes (NPHIs) in Ethiopia, Nigeria and Pakistan, to identify potential preparedness indicators that exist in a myriad of frameworks and tools in varying local institutions. Following a desk-based systematic search and expert consultations, indicators were extracted from existing national and subnational health security-relevant frameworks and prioritised in a multi-stakeholder two-round Delphi process. Eighty-six indicators in Ethiopia, 87 indicators in Nigeria and 51 indicators in Pakistan were assessed to be valid, relevant and feasible. From these, 14-16 indicators were prioritised in each of the three countries for consideration in monitoring and evaluation tools. Priority indicators consistently included private sector metrics, subnational capacities, availability and capacity for electronic surveillance, measures of timeliness for routine reporting, data quality scores and data related to internally displaced persons and returnees. NPHIs play an increasingly central role in health security and must have access to data needed to identify and respond rapidly to public health threats. Collecting and collating local sources of information may prove essential to addressing gaps; it is a necessary step towards improving preparedness and strengthening international health regulations compliance.

European Core Health Indicators - status and perspectives.

BACKGROUND: The European Core Health Indicators (ECHI) are a key source of comparable health information for the European Union (EU) and its Member States (MS). The ECHI shortlist contains 88 indicators which were developed by experts from MS and international organisations. Most indicators are derived from data sources at the EU's statistical office (Eurostat), the World Health Organisation (WHO) and the Organisation for Economic Co-operation and Development (OECD) and are available for most MS. The remaining indicators on the shortlist are at different stages of conceptual and/or methodological development. The indicators have been reviewed in the past against scientific developments, changes in data collections and emerging policy needs, yet not as part of a systematic and sustainable procedure. There is also no regular inventory of problems met by the MS in collecting the necessary data. Work package 4 of the BRIDGE Health project aimed at updating and improving the existing ECHI-indicator knowledge and expertise and at strengthening the scientific base that supports the effective development and use of health indicators for health policy evaluation and prioritization by the EU and its MS. The aim of this paper is to present a first overview of its outcomes and to explore issues concerning the ECHI data availability, content and policy relevance, update process and accessibility to stakeholders, in light of working towards a sustainable future. METHODS: Two surveys were conducted within the framework of the BRIDGE Health project to reassess the status of the ECHI shortlist. The first survey focused on data availability in EU MS, candidate countries and European Free Trade Association (EFTA) countries. The second survey evaluated current needs and criteria with respect to content and policy relevance of the ECHI shortlist. Exploring potential new indicator topics was part of both surveys. All evaluations were supported by an advisory network of national and international experts. RESULTS: Of the 36 countries (EU MS, candidate and EFTA countries) contacted for the data availability mapping, 23 countries (63%) participated in the survey. Data availability from preferred data sources varied between chapters. Availability was highest for the chapter on demography and socio-economic situation, followed by the chapter on health status, where data were available for most indicators from more than 90% of the participating countries. Problems experienced by MS relating to the incorporation of ECHI into their health systems were also identified through the survey. Findings from the survey on policy relevance point at the need for strengthening the links with policy (priorities) and for exploring a possible format change of the list to accommodate actionability. It also showed support for embedding ECHI in a sustainable health information structure; this may practically be aided by a web-based single point of access to an information repository. CONCLUSION: Policy relevance is an essential but not systematically developed criterion for the inclusion of indicators into the ECHI shortlist. Data availability is crucial for the actual implementation of indicators and has considerably increased for ECHI in the last decade. The data availability mapping provides a structured overview of the current status of data availability for implemented indicators. The ECHI shortlist can contribute to the collection of comparable policy-relevant health data in Europe, foster evidence-based public health and contribute to Member States learning from each other. Flexible and systematic incorporation of policy relevance in the ECHI shortlist review and revision process may substantiate ECHI as a core component of a future sustainable European health information infrastructure.

Corrigendum: Health monitoring and health indicators in Europe.

[This corrects the article on p. 3-21 in vol. 2.].

Health monitoring and health indicators in Europe.

Demographic change, new health threats and inequalities in health and healthcare provision in and between European Union (EU) member states pose a great challenge to European health care systems. Not only for these reasons does it make sense to collect comparable European health data. Such information provides insights on the distribution of risk and protection factors, the prevalence of chronic diseases and the levels of care provided in the member states and supports the planning and implementation of (health) policy measures. Since 2013, in the context of the European Health Interview Survey (EHIS), all EU member states are obliged to collect data on the health status, the provision of healthcare, health determinants and socio-economic conditions of their populations. In Germany, the EHIS is integrated into health monitoring at the Robert Koch Institute (RKI). The RKI is thus Germany's interface to the European health monitoring presented here. European health monitoring relies on different indicator systems such as the European Core Health Indicators (ECHI), EU social indicators and the health indicators of the European Sustainable Development Strategy. These are based on administrative and survey data, which stem for example from the EHIS or the European Union Statistics on Income and Living Conditions (EU-SILC) survey. Comparative data analyses must take into account the differences between health care systems, socioeconomic conditions and the age structures of societies. Variances in the prevalence of allergies for example are also due to differences in the available diagnostic tools. Significant differences in the prevalence of hypertension in Europe (with a range of 20% for women and 17% for men) are also related to different levels of awareness of hypertension. Comparative analyses can support the planning of and provide information for policy measures, and enhance the sharing of experiences between EU member states. A forthcoming EU regulation aims to harmonise the content of and intervals between health and social statistical data collection. Moreover, plans exist to establish a European Research Infrastructure Consortium (ERIC), which is set to develop and institutionalise European health monitoring.

Limitations to usual activities due to health problems in Germany.

Limitations to usual activities due to health problems impact quality of life and well-being. The Global Activity Limitation Indicator (GALI) was developed to assess the trends in limitations to usual activities. The GALI question is applied in a single or routed, multi-question version. GEDA 2014/2015-EHIS for the first time applied a three-question version. Three quarters of respondents reported that they did not experience any limitations to their usual activities. 18.7% of women and 17.0% of men said they had experienced moderate limitations. 6.4% of women and 6.8% of men reported severe limitations. The share of respondents experiencing limitations increases with age and shows a clear education gradient. Changes in methodology, however, mean that current results based on the GALI question cannot be compared to the results from earlier survey waves of the same study.

The German government's global health strategy--a strategy also to support research and development for neglected diseases?

Neglected tropical infectious diseases as well as rare diseases are characterized by structural research and development (R&D) deficits. The market fails for these disease groups. Consequently, to meet public health and individual patient needs, political decision makers have to develop strategies at national and international levels to make up for this R&D deficit. The German government recently published its first global health strategy. The strategy underlines the German government's commitment to strengthening global health governance. We find, however, that the strategy lacks behind the international public health endeavors for neglected diseases. It fails to make reference to the ongoing debate on a global health agreement. Neither does it outline a comprehensive national strategy to promote R&D into neglected diseases, which would integrate existing R&D activities in Germany and link up to the international debate on sustainable, needs-based R&D and affordable access. This despite the fact that only recently, in a consensus-building process, a National Plan of Action for rare diseases was successfully developed in Germany which could serve as a blueprint for a similar course of action for neglected diseases. We recommend that, without delay, a structured process be initiated in Germany to explore all options to promote R&D for neglected diseases, including a global health agreement.

Expert Delphi survey on research and development into drugs for neglected diseases.

BACKGROUND: Tropical infectious diseases are called neglected, because they are, inter alia, characterized by an R&D deficit. A similar deficit exists for rare (orphan) diseases which neither promise a sufficient return on R&D investment. To encourage the development of treatments for rare diseases, orphan drug acts were created which contain financial and non-financial incentives for the pharmaceutical industry. Similar instruments aimed exclusively at neglected diseases do not yet exist. Proposals for a regulatory approach to promote R&D for neglected diseases include the application of selected orphan drug incentives, or the implementation of a Medical Research and Development Treaty (MRDT) with national funding obligations for medical R&D. We compiled and analyzed experts' opinions on causes for the treatment deficit for neglected diseases and on desirable and feasible measures to promote neglected disease R&D. Hereby, the focus was on mechanisms contained in orphan drug regulations and in the Medical Research and Development Treaty draft (Discussion draft 4, 2005). Lastly, we solicited experts' opinions on the desirability and feasibility of a regulatory instrument to foster R&D for neglected diseases. METHODS: An international online-Delphi survey was conducted with 117 (first round) and 56 (second round) experts of different professional backgrounds and professional affiliations who formulated and ranked causes and solutions related to the treatment deficit for neglected diseases. RESULTS: In both rounds of survey, the majority of the participating experts (88.4% first round, 86.8% second round) advocated the development of a regulatory instrument to promote R&D for neglected diseases. Most experts (77.9% first round, 79.3% second round) also considered this to be a feasible option. With the exception of market exclusivity, which was viewed critically, key provisions contained in orphan drug regulations were judged favorably also for neglected diseases. A majority (87.1% first round, 77.2% second round) supported national funding obligations for neglected diseases which are proposed by the Medical Research and Development Treaty draft. CONCLUSIONS: While not all features of orphan drug regulations and of the MRDT draft received equal support, the view was expressed that a regulatory instrument would be a desirable and feasible measure to promote R&D for neglected diseases.