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Background: The panel infrastructure Health in Germany, which is currently being set up, is geared towards the needs of public health research in Germany. The panel will consist of extensive probability and non-probability samples. This infrastructure will be used to collect survey data, measurement data and laboratory data to describe the health situation on an ongoing basis and make them available promptly. Methods: For the initial drawing of the probability sample, the sampling frame of the residents’ registration offices (EMA) established in Germany is used. The study design follows a mixed-mode approach in which the invited persons can choose whether to participate in the survey online or in paper form. Four surveys per year are planned for the regular operation of the panel (regular annual wave). Ad-hoc studies on specific topics or acute issues are also possible. Conclusions: The panel provides a new infrastructure for continuous epidemiological studies to monitor the health of the population in Germany. This data basis strengthens the health monitoring and health reporting of the federal government, enabling a prompt and adaptable response to emerging data needs.

Abstract Pre-vaccine SARS-CoV-2 seroprevalence data from Germany are scarce outside hotspots, and socioeconomic disparities remained largely unexplored. The nationwide representative RKI-SOEP study (15,122 participants, 18–99 years, 54% women) investigated seroprevalence and testing in a supplementary wave of the Socio-Economic-Panel conducted predominantly in October–November 2020. Self-collected oral-nasal swabs were PCR-positive in 0.4% and Euroimmun anti-SARS-CoV-2-S1-IgG ELISA from dry-capillary-blood antibody-positive in 1.3% (95% CI 0.9–1.7%, population-weighted, corrected for sensitivity = 0.811, specificity = 0.997). Seroprevalence was 1.7% (95% CI 1.2–2.3%) when additionally correcting for antibody decay. Overall infection prevalence including self-reports was 2.1%. We estimate 45% (95% CI 21–60%) undetected cases and lower detection in socioeconomically deprived districts. Prior SARS-CoV-2 testing was reported by 18% from the lower educational group vs. 25% and 26% from the medium and high educational group (p

Abstract 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.

Abstract 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.

Abstract 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.

Abstract 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.

Abstract Background The InfAct (Information for Action) project is a European Commission Joint Action on Health Information which has promoted the potential role of burden of disease (BoD) approaches to improve the current European Union-Health Information System (EU-HIS). It has done so by raising awareness of the concept, the methods used to calculate estimates and their potential implications and uses in policymaking. The BoD approach is a systematic and scientific effort to quantify and compare the magnitude of health loss due to different diseases, injuries, and risk factors with estimates produced by demographic characteristics and geographies for specific points in time. Not all countries have the resources to undertake such work, and may therefore start with a more restricted objective, e.g., a limited number of diseases, or the use of simple measures of population health such as disease prevalence or life expectancy. The main objective to develop these recommendations was to facilitate those countries planning to start a national burden of disease study. Results These recommendations could be considered as minimum requirements for those countries planning to start a BoD study and includes following elements: (1) Define the objectives of a burden of disease study within the context of your country, (2) Identify, communicate and secure the benefits of performing national burden of disease studies, (3) Secure access to the minimum required data sources, (4) Ensure the minimum required capacity and capability is available to carry out burden of disease study, (5) Establish a clear governance structure for the burden of disease study and stakeholder engagement/involvement, (6) Choose the appropriate methodological approaches and (7) Knowledge translation. These were guided by the results from our survey performed to identify the needs of European countries for BoD studies, a narrative overview from four European countries (Belgium, Germany, The Netherlands and Scotland) and the summary of a comparative study of country health profiles with national health statistics. Conclusions These recommendations as minimum requirements would facilitate efforts by those European countries who intend to perform national BoD studies.

Gestational diabetes mellitus (GDM) is an important risk factor for pregnancy complications. Since 2012, the Federal Joint Committee’s maternity directive recommends a two-step screening for GDM with a pre-test and subsequent diagnostic test if the pre-test is positive. This study analyses the implementation and development over time of GDM screening participation and prevalence in Germany. The data basis is the external inpatient obstetrics quality assurance documentation, which covers all births in hospital. Women with diabetes before pregnancy were excluded. The study defined women as GDM cases if the condition was documented in maternity records or if the ICD-10 diagnosis O24.4 was coded for inpatients at discharge and figures were determined for the years 2013 to 2018. As the documentation of screening tests has only been included in the data set since 2016, screening participation for the years 2016 to 2018 were estimated and evaluated based on the pre-test and/or diagnostic tests documented in maternity records. In 2018, the majority of all women who gave birth in hospitals had had a pre-test conducted (65.0%) or a pre-test and diagnostic test (18.2%) in line with the two-step procedure. A further 6.7% received a diagnostic test alone. GDM screening participation increased over time from 83.4% in 2016 to 89.9% in 2018. The prevalence of a documented GDM increased from 4.6% to 6.8% between 2013 and 2018. In 2018, this equates to 51,318 women with GDM. Reliably assessing the extent and causes of this development will require continuous analyses of screening implementation, documentation and changes in maternal risk factors.

The SARS-CoV-2 coronavirus has spread rapidly across Germany. Infections are likely to be under-recorded in the notification data from local health authorities on laboratory-confirmed cases since SARS-CoV-2 infections can proceed with few symptoms and then often remain undetected. Seroepidemiological studies allow the estimation of the proportion in the population that has been infected with SARS-CoV-2 (seroprevalence) as well as the extent of undetected infections. The ‘CORONA-MONITORING bundesweit’ study (RKI-SOEP study) collects biospecimens and interview data in a nationwide population sample drawn from the German Socio-Economic Panel (SOEP). Participants are sent materials to self-collect a dry blood sample of capillary blood from their finger and a swab sample from their mouth and nose, as well as a questionnaire. The samples returned are tested for SARS-CoV-2 IgG antibodies and SARS-CoV-2 RNA to identify past or present infections. The methods applied enable the identification of SARS-CoV-2 infections, including those that previously went undetected. In addition, by linking the data collected with available SOEP data, the study has the potential to investigate social and health-related differences in infection status. Thus, the study contributes to an improved understanding of the extent of the epidemic in Germany, as well as identification of target groups for infection protection.

Headache disorders are widespread among women and men in Germany and are primarily associated with restrictions on quality of life. The two most common types of headache disorders are migraine and tension-type headache. In order to gain valid estimates of the prevalence of these conditions, a cross-sectional telephone-based survey was conducted among adults in Germany (N=5,009) between October 2019 and March 2020. The frequency, duration, the characteristics and comorbidities associated with headache were measured using the diagnostic criteria defined in the International Classification of Headache Disorders. 57.5% of women and 44.4% of men in Germany stated that they had had a headache in the last twelve months. 14.8% of women and 6.0% of men meet all of the diagnostic criteria for migraine. Tension-type headache affects 10.3% of women and 6.5% of men. Migraine and tension-type headache are predominantly found among people of working age and steadily decrease with age. Migraine is often accompanied by comorbidities such as depressive symptoms and anxiety disorders. People affected by headache disorders tend to receive very little professional medical care, with only a minority seeking treatment within a year. These results provide a comprehensive picture of the population-related impact of headache disorders and are used in the BURDEN 2020 study to quantify key indicators for burden of disease assessment.

Abstract Background In order to close existing information gaps on diabetes-related health perceptions, diabetes knowledge, and information-seeking behaviors among adults in Germany, a representative population-based survey targeting the German-speaking population 18 years and older with and without diabetes was conducted. The aim of the present work was to analyze the psychometric properties of the multi-item scales, applied in the survey in order to provide guidance for decisions on the use of these measurements for future research. Methods Based on data from participants who completed the final survey (N = 1479 with known diabetes; N = 2327 without known diabetes) reliability and unidimensionality of multi-item scales were tested using Cronbach’s Alpha and confirmatory factor analysis (CFA). Results Psychometric properties and model fit varied across scales. Cronbach’s alpha values ranged from very good to unacceptable. Model fit indices suggested evidence of a single underlying factor in some but not all scales. Adequate reliability and at least mediocre model fit were found for diabetes distress and patient-provider-relationship in people with diabetes and for perceived level of information in individuals without diabetes. Scales revealing inacceptable reliability values or not suggesting unidimensionality were e.g. diabetes-related stigmatization in both individuals with and without diabetes, self-efficacy in individuals with diabetes, and perceived personal control in those without diabetes. Conclusion Based on results of the current study, some of the scales applied in the survey can be recommended for present and future analyses of the survey data and for future surveys (e.g. diabetes distress, patient-provider-relationship in people with diabetes). Other scales should be interpreted and used with caution (e.g. depressive symptoms in people with diabetes) while others should be reformulated, interpreted only as single items, or need further investigation (e.g. diabetes-related stigmatization in people with and without diabetes). Findings provide researchers the opportunity to evaluate diabetes-specific scales in population-based studies of adults with and without diabetes.

Introduction: Until today, the role of children in the transmission dynamics of SARS-CoV-2 and the development of the COVID-19 pandemic seems to be dynamic and is not finally resolved. The primary aim of this study is to investigate the transmission dynamics of SARS-CoV-2 in child day care centers and connected households as well as transmission-related indicators and clinical symptoms among children and adults.Methods and Analysis: COALA (“Corona outbreak-related examinations in day care centers”) is a day care center- and household-based study with a case-ascertained study design. Based on day care centers with at least one reported case of SARS-CoV-2, we include one- to six-year-old children and staff of the affected group in the day care center as well as their respective households. We visit each child's and adult's household. During the home visit we take from each household member a combined mouth and nose swab as well as a saliva sample for analysis of SARS-CoV-2-RNA by real-time reverse transcription polymerase chain reaction (real-time RT-PCR) and a capillary blood sample for a retrospective assessment of an earlier SARS-CoV-2 infection. Furthermore, information on health status, socio-demographics and COVID-19 protective measures are collected via a short telephone interview in the subsequent days. In the following 12 days, household members (or parents for their children) self-collect the same respiratory samples as described above every 3 days and a stool sample for children once. COVID-19 symptoms are documented daily in a symptom diary. Approximately 35 days after testing the index case, every participant who tested positive for SARS-CoV-2 during the study is re-visited at home for another capillary blood sample and a standardized interview. The analysis includes secondary attack rates, by age of primary case, both in the day care center and in households, as well as viral shedding dynamics, including the beginning of shedding relative to symptom onset and viral clearance.Discussion: The results contribute to a better understanding of the epidemiological and virological transmission-related indicators of SARS-CoV-2 among young children, as compared to adults and the interplay between day care and households.

As part of the project Improving Health Monitoring in Migrant Populations (IMIRA), a (core) set of indicators was developed to describe the health of people with a migration background. This work was underpinned by research into and assessment of relevant data sources in the field of migration and health. Initially, four fields of action were identified together with a number of associated topics and potential indicators for each of the area’s individual topics. The choice of core indicators was based on (1) a systematic comparison of widely accepted indicator systems, (2) an assessment of public health relevance, (3) comprehensibility and (4) informative value, as well as (5) the availability of (largely) representative data that could properly account for the diversity of the migrant population. The (core) indicator set was finalised using an internal and external indicator development process that involved an interdisciplinary expert panel. This resulted in the selection of 25 core indicators; 41 additional indicators were documented as part of an ‘extended’ indicator set. The (core) set of indicators is to be continually developed in line with the work being undertaken to improve the integration of people with a migration background in the health monitoring conducted at the Robert Koch Institute. In the future, the indicator set is to be incorporated into an overall concept to regular, migration-related health reporting.

Against the background of the growing burden associated with diabetes mellitus, the German Federal Ministry of Health commissioned the Robert Koch Institute to develop a national diabetes surveillance. The periodic publication of up-to-date data needed by diverse target audiences (dissemination) to develop subsequent public health measures is a crucial aspect of disease surveillance. The study produced an overview of diabetes surveillance in various countries with the intention of developing a dissemination strategy. This involved a two-stage process beginning with an online survey of public health experts from 46 countries. Structured Internet research was then carried out for countries that did not provide a response (19 out of 46). The majority of countries (38 out of 46; 83%) include diabetes in their health reporting; three quarters (29 out of 38; 77%) of these countries rely on an indicator-based reporting system. The study found that the most common formats used to publish information about diabetes and other noncommunicable diseases were topic-specific reports (24 out of 36; 67%) and national health reports (23 out of 36; 64%), followed by online formats such as websites or databases (20 out of 36; 57%). Moreover, health reporting primarily targets politicians (19 out of 20; 95%) as well as the media and the press (16 out of 20; 80%). The study found that both printed and online publications form part of a comprehensive dissemination strategy, however address different audiences.

In addition to the Robert Koch Institute’s health surveys, analyses of secondary data are essential to successfully developing a regular and comprehensive description of the progression of diabetes as part of the Robert Koch Institute’s diabetes surveillance. Mainly, this is due to the large sample size and the fact that secondary data are routinely collected, which allows for highly stratified analyses in short time intervals. The fragmented availability of data means that various sources of secondary data are required in order to provide data for the indicators in the four fields of action for diabetes surveillance. Thus, a milestone in the project was to check the suitability of different data sources for their usability and to carry out analyses. Against this backdrop, co-operation projects were specifically funded in the context of diabetes surveillance. This article presents the results that were achieved in co-operation projects between 2016 and 2018 that focused on a range of topics: from evaluating the usability of secondary data to statistically modelling the development of epidemiological indices. Moreover, based on the data of the around 70 million people covered by statutory health insurance, an initial estimate was calculated for the documented prevalence of type 2 diabetes for the years 2010 and 2011. To comparably integrate these prevalences over the years in diabetes surveillance, a reference definition was established with external expertise.

Germany is an immigration country and nearly a quarter of its population has a migration background. Thus, there is increasingly a need for reliable information on the health situation of people with a migration background. The Robert Koch Institute is in charge of expanding its health monitoring to improve the representation of people with a migration background in interview and examination surveys. Studies adequately need to reflect the health status of people with a migration background and currently the Robert Koch Institute’s representative interview and examination surveys for adults do not fully achieve this. At the end of 2016, therefore, the Improving Health Monitoring in Migrant Populations (IMIRA) project was initiated aiming to expand the Robert Koch Institute’s health monitoring to people with migration background and improve their involvement in health surveys in the long-term. This includes carrying out two feasibility studies to test strategies to reach and recruit people with migration background for interview surveys and develop measures to overcome language barriers in examination surveys. In order to expand health reporting on migration and health, a reporting concept and a core indicator set will be developed and the potential of (secondary) data sources will be tested. Furthermore, plans foresee the testing and further development of relevant specific migration sensitive survey instruments and indicators, as well as increasing networking with relevant stakeholders.

Objectives Little is known about the age-specific excess mortality pattern of people with diagnosed diabetes in Germany. Thus, our goal was to determine the excess mortality in diagnosed diabetes overall and stratified by age and sex based on claims data.Design Routine data analysis using a claims dataset from all statutory health-insured persons in Germany in 2013, which accounts for about 90% of the population.Participants We included persons who lived in Germany, were insured at least 360 days, were not self-paying any health services and were aged 30 years or older leading to a total number of 47.3 million insured persons for analyses.Exposure Diabetes was determined by the International Classification of Diseases-10 codes E10–E14, which were documented in 2013 in at least two-quarters on an outpatient setting or at least once on an inpatient setting.Outcome measures The vital status in the study population was drawn from the claims dataset for the year 2014. We derived the excess mortality estimated as an age-adjusted mortality rate ratio (MRR) by sex and for age groups using a Poisson model.Main results We found age-adjusted MRRs (95% CI) for diabetes of 1.52 (1.51 to 1.52) for women and 1.56 (1.56 to 1.56) for men. These figures declined with increasing age and were highest for ages 30–34 years with 6.76 (4.99 to 9.15) for women and 6.87 (5.46 to 8.64) for men, and lowest for age 95 years and older with 1.13 (1.10 to 1.15) for women and 1.11 (1.05 to 1.17) for men.Conclusions We derived deeply age-stratified figures on excess mortality in diabetes for Germany. Establishing a sustainable analysis of excess mortality is aimed at within the framework of diabetes surveillance.

Abstract 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.

Mainly because of the large number of people affected and associated significant health policy implications, the Robert Koch Institute (RKI) is developing a public health surveillance system using diabetes as an example. In a first step to ensure long-term and comparable data collection and establish efficient surveillance structures, the RKI has defined a set of relevant indicators for diabetes surveillance. An extensive review of the available literature followed by a structured process of consensus provided the basis for a harmonised set of 30 core and 10 supplementary indicators. They correspond to the following four fields of activity: (1) reducing diabetes risk, (2) improving diabetes early detection and treatment, (3) reducing diabetes complications, (4) reducing the disease burden and overall costs of the disease. In future, in addition to the primary data provided by RKI health monitoring diabetes surveillance needs to also consider the results from secondary data sources. Currently, barriers to accessing this data remain, which will have to be overcome, and gaps in the data closed. The RKI intentends to continuously update this set of indicators and at some point apply it also to further chronic diseases with high public health relevance.

Very little research has been undertaken into what people in Germany know about diabetes, the information they may require about the condition, where they look for such information and how they rate the information currently available. In 2017, the Robert Koch Institute (RKI) carried out a nationwide telephone survey aimed at answering these questions. The study entitled ‘Disease knowledge and information needs - Diabetes mellitus (2017)’ focused on people aged at least 18 years. A total of 2,327 people without diabetes and 1,479 people with diagnosed diabetes were interviewed for the study. First results show that 56.7% of people without diabetes and 92.8% of those with diabetes rate their knowledge about the condition as ‘very good’ or ‘good’. People without diabetes were found to have the strongest need for information in terms of ‘lifestyle changes, health promotion and disease prevention’, whereas respondents with diabetes stressed the strongest need for information about ‘treatment and therapy’. Almost a third of respondents without diabetes have actively sought information about diabetes at least once, mostly via print media. Patients with diabetes stated that their general practitioner was their most frequent source of information about the condition. In both groups, about half of respondents reported that they found it difficult to judge the trustworthiness of the information published in the media about diabetes. The results of the study form part of the German National Diabetes Surveillance, which is coordinated by the RKI. The data are also intended to be used by the Federal Centre for Health Education to develop a strategy to improve the information provided about diabetes.

The fieldwork of the second follow-up to the German Health Interview and Examination Survey for Children and Adolescents (KiGGS) was completed in August 2017. KiGGS is part of the Robert Koch Institute’s Federal Health Monitoring. The study consists of the KiGGS cross-sectional component (a nationally representative, periodic cross-sectional survey of children and adolescents aged between 0 and 17) and the KiGGS cohort (the follow-up into adulthood of participants who took part in the KiGGS baseline study). KiGGS collects data on health status, health-related behaviour, psychosocial risk and protective factors, health care and the living conditions of children and adolescents in Germany. The first interview and examination survey (the KiGGS baseline study; undertaken between 2003 and 2006; n=17,641; age range: 0-17) was carried out in a total of 167 sample points in Germany. Physical examinations, laboratory analyses of blood and urine samples and various physical tests were conducted with the participants and, in addition, all parents and participants aged 11 or above were interviewed. The first follow-up was conducted via telephone-based interviews (KiGGS Wave 1 2009-2012; n=11,992; age range: 6-24) and an additional sample was included (n=4,455; age range: 0-6). KiGGS Wave 2 (2014-2017) was conducted as an interview and examination survey and consisted of a new, nationwide, representative cross-sectional sample of 0- to 17-year-old children and adolescents in Germany, and the second KiGGS cohort follow-up. The completion of the cross-sectional component of KiGGS Wave 2 means that the health of children and adolescents in Germany can now be assessed using representative data gained from three study waves. Trends can therefore be analysed over a period stretching to over ten years now. As the data collected from participants of the KiGGS cohort can be individually linked across the various surveys, in-depth analyses can be conducted for a period ranging from childhood to young adulthood and developmental processes associated with physical and mental health and the associated risk and protective factors can be explored. As such, KiGGS Wave 2 expands the resources available to health reporting, as well as policy planning and research, with regard to assessing the health of children and adolescents in Germany.

In November 2016, during a workshop organised by the Robert Koch Institute together with the Federal Centre for Health Education, we presented and discussed activities and models surrounding prevention reporting with health reporting representatives from the federal states. The motive for the event was the prevention report, which the National Prevention Conference will prepare every four years beginning in 2019 in order to document, monitor and evaluate its activities. The workshop revealed the desire of stakeholders to discuss survey methods and indicators and harmonise the different reporting systems in the long-term.

GEDA 2014/2015-EHIS is an up-to-date health survey of the adult population undertaken within the framework of the Robert Koch Institute’s (RKI) health monitoring system. It uses the EHIS (European Health Interview Survey) Wave 2 questionnaire and includes four modules covering health status, health care, health determinants, and socio-economic variables. Data on nationally relevant issues is also collected. The study employs a mixed-mode design, using both online and paper-based questionnaires to gather data from 24,016 people aged 18 and above: the response rate was 26.9%. The Statistical Office of the European Union (Eurostat) provides prepared data from 28 European Union (EU) member states (plus Norway and Iceland) on the Eurostat website. National analyses for Germany are published as Fact sheets on health reporting in the Journal of Health Monitoring.

Diabetes mellitus is a chronic disease that is associated with serious health problems and high costs. According to estimates gained from nationally representative health surveys conducted by the Robert Koch Institute (RKI), 4.6 million adults aged 18 to 79 suffer from diabetes in Germany. In addition, around 1.3 million adults have undetected diabetes. A surveillance system is currently being established at the RKI in order to gather the data sources available on diabetes in Germany and to provide reliable and comparable findings on time trends covering the frequency, progress of treatment, prevention and care of the disease. Next to identifying trends, diabetes surveillance also needs to detect differences in epidemiology that are related to social status or geographic region. Diabetes surveillance at the RKI is being undertaken in close cooperation with stakeholders involved in science, health-care provision, health policy and health-system self-governance. Furthermore, its progress is accompanied by an interdisciplinary scientific advisory board. Diabetes surveillance involves the following key elements: 1) the development of a research-based conceptual framework that uses indicators to appropriately measure developments in the disease; 2) the establishment of standards for the use of existing data sources and the identification of barriers to data usage and gaps in the data; and 3) the implementation of focused health reporting that is geared towards the target group. In addition to policy consultations, diabetes surveillance must guarantee the provision of timely and continuous information to the public together with the Federal Agency for Health Education. The implementation of a diabetes surveillance in Germany should act as a model and serve as a basis with which to establish the surveillance of other non-communicable diseases. In principle, indicator-based diabetes monitoring at the population level can be viewed as providing the body for evidence-based policy consultation and focused health policy. In turn, this should enable the implementation of effective disease prevention measures and high-quality care for all groups within the population.