European Health Research Research Articles

Cross-sectional exploratory survey among health researchers in Europe on the awareness of and barriers affecting the use of an evidence-based research approach

ObjectivesThis exploratory study was conducted to find out how well the concept of evidence-based research (EBR) is known among European health researchers with substantial clinical research experience, and which barriers...

Desiderata for discoverability and FAIR adoption of health data hubs

BackgroundThe future European Health Research and Innovation Cloud (HRIC), as fundamental part of the European Health Data Space (EHDS), will promote the secondary use of data and the capabilities to push the boundaries of health research within an ethical and legally compliant framework that reinforces the trust of patients and citizens. ObjectiveThis study aimed to analyse health data management mechanisms in Europe to determine their alignment with FAIR principles and data discovery generating best.practices for new data hubs joining the HRIC ecosystem. In this line, the compliance of health data hubs with FAIR principles and data discovery were assessed, and a set of best practices for health data hubs was concluded. MethodsA survey was conducted in January 2022, involving 99 representative health data hubs from multiple countries, and 42 responses were obtained in June 2022. Stratification methods were employed to cover different levels of granularity. The survey data was analysed to assess compliance with FAIR and data discovery principles. The study started with a general analysis of survey responses, followed by the creation of specific profiles based on three categories: organization type, function, and level of data aggregation. ResultsThe study produced specific best practices for data hubs regarding the adoption of FAIR principles and data discoverability. It also provided an overview of the survey study and specific profiles derived from category analysis, considering different types of data hubs. ConclusionsThe study concluded that a significant number of health data hubs in Europe did not fully comply with FAIR and data discovery principles. However, the study identified specific best practices that can guide new data hubs in adhering to these principles. The study highlighted the importance of aligning health data management mechanisms with FAIR principles to enhance interoperability and reusability in the future HRIC.

Preserving privacy in European health research: The case of synthetic data

This paper investigates the role of synthetic data in the field of health research, with a particular focus on data protection. More specifically, it aims at clarifying whether this new technology represents an alternative to more classic anonymisation techniques. The analysis is construed on a review of the existing literature; nevertheless, it is noted that the majority of contributions focuses on the technical aspects of synthetic data and machine learning, while less legal studies have been conducted on this topic. The outcome of this study outlines that, by using synthetic data which respects the ‘privacy by design’ principle (although the identifiability risk still exists), researchers are no longer occupied by the question of re-identification but rather focus on the quality and utility of synthetic datasets. After examining the different solutions applied to enshrine privacy, however, this paper concludes there is a necessity for regulating the use of artificially generated data for research and machine learning purposes.

Position paper on management of personal data in environment and health research in Europe.

Management of datasets that include health information and other sensitive personal information of European study participants has to be compliant with the General Data Protection Regulation (GDPR, Regulation (EU) 2016/679). Within scientific research, the widely subscribed'FAIR' data principles should apply, meaning that research data should be findable, accessible, interoperable and re-usable. Balancing the aim of open science driven FAIR data management with GDPR compliant personal data protection safeguards is now a common challenge for many research projects dealing with (sensitive) personal data. In December 2020 a workshop was held with representatives of several large EU research consortia and of the European Commission to reflect on how to apply the FAIR data principles for environment and health research (E&H). Several recent data intensive EU funded E&H research projects face this challenge and work intensively towards developing solutions to access, exchange, store, handle, share, process and use such sensitive personal data, with the aim to support European and transnational collaborations. As a result, several recommendations, opportunities and current limitations were formulated. New technical developments such as federated data management and analysis systems, machine learning together with advanced search software, harmonized ontologies and data quality standards should in principle facilitate the FAIRification of data. To address ethical, legal, political and financial obstacles to the wider re-use of data for research purposes, both specific expertise and underpinning infrastructure are needed. There is a need for the E&H research data to find their place in the European Open Science Cloud. Communities using health and population data, environmental data and other publicly available data have to interconnect and synergize. To maximize the use and re-use of environment and health data, a dedicated supporting European infrastructure effort, such as the EIRENE research infrastructure within the ESFRI roadmap 2021, is needed that would interact with existing infrastructures.

Network on the Coordination and Harmonisation of European Occupational Cohorts (OMEGA-NET)

BACKGROUND AND AIM: Employment is an essential component of adult life, and occupation is a major determinant of health. However, there has been little coordinated occupational health research in Europe and globally. Europe has many valuable occupational, industrial, and population cohorts. There is a need for integration of these cohorts to facilitate their exploitation, essential to underpin evidence-based interventions and policy. METHODS: OMEGA-NET (omeganetcohorts.eu) is a COST Action network (2017–2021), funded by EU, currently involving researchers from 40 European, near neighbour and international partner countries. The overarching concept is to create a network to advance i) collaboration of existing cohorts, ii) coordination and harmonisation of occupational exposure assessment, and iii) facilitation of an integrated research strategy for occupational health in Europe. RESULTS:OMEGA-NET is currently building two online searchable inventories: Inventory of Occupational Cohorts (presented in this mini-symposium), and Inventory of Exposure Assessment Tools. Working Groups are doing harmonisation of occupational exposure and health outcome information, as well as developing standardised protocols for future occupational exposure and health outcome information, some in the form of position papers. Harmonisation of occupational health outcomes currently include Burnout, Musculoskeletal disorders, Allergies and Cancer. Topics of the protocols or position papers include Healthy ageing and work participation, Working hours, Employment patterns in the young including young employed mothers, Occupational skin diseases, Work-related psychosocial determinants on mental health, Precarious employment (presented in this mini-symposium) and Migrant workers. OMEGA-NET also includes opportunities for networking, leadership and training for early career researchers in occupational epidemiology and exposure assessment, and visits to other research institutions, as well as stakeholder engagement. CONCLUSIONS:Collaboration through OMEGA-NET will enhance the scientific occupational health research, recently demonstrated through EU funding of the EPHOR project (Exposome Project for Health and Occupational Research). OMEGA-NET is promoting much needed global collaboration on occupational health. KEYWORDS: International collaboration, Occupational epidemiology, Occupational exposures, Outcomes

Setting priorities in environment, climate and health research in Europe

Background. Environmental degradation and pollution, climate change and disruption of ecosystems services damage health and quality of life, and differentially affect socially disadvantaged and vulnerable population groups. The HERA project, funded by the EU Horizon2020 research framework programme, set priorities for an environment and health research agenda in the EU for 2020-2030, closely connected to policy needs. Methods. HERA consists of 24 partners from environment, climate and health centres. Following a review of evidence and policies, a methodology was devised to identify and consult scientific communities and relevant stakeholder groups (policy makers, local authorities, NGOs, industry and others) across Europe to identify the knowledge gaps in environment, climate and health research. Web-based surveys were carried out along with online and face-to-face consultation meetings. Results. Research priorities relate to environmental exposures, sector-based and holistic approaches, methodologies and infrastructures, and higher-level transformational research. The consultation resulted in 6 main Research Goals and within each goal specific objectives: (i) Reduce the effects of climate change and ecological degradation on health; (ii) Eliminate environmental exposures harmful to health; (iii) Promote healthy lives in sustainable and inclusive societies; (iv) Improve health impact assessment of environmental factors and promote intervention research; (v) Develop infrastructures, technologies and human resources for sustainable research on environmental and health; (vi) Support transformational change approaches in environment and health research. Research goals are closely linked to several SDGS. Europe-wide consultations will be continued to refine the priority assessment and to develop regional research agendas. Conclusion. This large systematic initiative involved hundreds of researchers and stakeholders to set priorities for environmental health research for policies in Europe. The inclusion of both researchers and community stakeholders significantly enriched the procedure. Methodologies for defining priorities need to be further developed. Further work will adapt the report to capture research needs at a global scale.

Setting Occupational Health Research Priorities in Europe: the HERA Project

Background: Occupation and employment is a major determinant of health. Despite profound changes in working life there has been little coordinated European health research on occupation. We present first results from the Health and Environment Research Agenda (HERA) project, to set priorities for an environment and health research agenda in the European Union for 2020-2030. Methods: We contacted hundreds of researchers in Europe through an online survey. We also identified major policy needs in the health and environment/occupation nexus by contacting national, regional and European stakeholders representing authorities, intergovernmental organisations, civil society and private sector through surveys and regional meetings. We applied a priori defined criteria to examine novelty, public health importance, importance to the environment, impact on policies, and potential for innovation within the sustainable development goals. Results: Main occupational research gaps identified include: (i) Climate change and worker health; (ii) Ageing workers; (iii) New technologies and chemicals; (iv) Working time; (v) Changing employment patterns and precarious employment; (vi) Mixed exposures and biomonitoring; (vii) Work-life-balance; and (viii) Neglected occupational diseases. In addition, priority actions related to occupation were identified such as commuting to work, tools and infrastructure such as the development of big data, biobanks, large population cohorts with occupational information and occupational cohorts, development of exposome type approaches, and approaches examining societal aspects on employment and productivity. Conclusions: We will discuss challenges in the identification of key areas on occupation and health research that will benefit from new scientific evidence and challenges in strategies to ensure the engagement of stakeholders. This large initiative in Europe has systematically evaluated priorities through the engagement of a wide spectrum of stakeholders across the continent. A longer consultation process will continue over the next 2 years to raise additional research gaps and calibrate recommendations.

Joining forces to strengthen European health research.

Joining forces to strengthen European health research.

Leveraging Interdisciplinary Education Toward Securing the Future of Connected Health Research in Europe: Qualitative Study.

BackgroundConnected health (CH) technologies have resulted in a paradigm shift, moving health care steadily toward a more patient-centered delivery approach. CH requires a broad range of disciplinary expertise from across the spectrum to work in a cohesive and productive way. Building this interdisciplinary relationship at an earlier stage of career development may nurture and accelerate the CH developments and innovations required for future health care.ObjectiveThis study aimed to explore the perceptions of interdisciplinary CH researchers regarding the design and delivery of an interdisciplinary education (IDE) module for disciplines currently engaged in CH research (engineers, computer scientists, health care practitioners, and policy makers). This study also investigated whether this module should be delivered as a taught component of an undergraduate, master’s, or doctoral program to facilitate the development of interdisciplinary learning.MethodsA qualitative, cross-institutional, multistage research approach was adopted, which involved a background study of fundamental concepts, individual interviews with CH researchers in Greece (n=9), and two structured group feedback sessions with CH researchers in Ireland (n=10/16). Thematic analysis was used to identify the themes emerging from the interviews and structured group feedback sessions.ResultsA total of two sets of findings emerged from the data. In the first instance, challenges to interdisciplinary work were identified, including communication challenges, divergent awareness of state-of-the-art CH technologies across disciplines, and cultural resistance to interdisciplinarity. The second set of findings were related to the design for interdisciplinarity. In this regard, the need to link research and education with real-world practice emerged as a key design concern. Positioning within the program context was also considered to be important with a need to balance early intervention to embed integration with later repeat interventions that maximize opportunities to share skills and experiences.ConclusionsThe authors raise and address challenges to interdisciplinary program design for CH based on an abductive approach combining interdisciplinary and interprofessional education literature and the collection of qualitative data. This recipe approach for interdisciplinary design offers guidelines for policy makers, educators, and innovators in the CH space. Gaining insight from CH researchers regarding the development of an IDE module has offered the designers a novel insight regarding the curriculum, timing, delivery, and potential challenges that may be encountered.

Observational health research in Europe: understanding the General Data Protection Regulation and underlying debate

Insights into the incidence and survival of cancer, the influence of lifestyle and environmental factors and the interaction of treatment regimens with outcomes are hugely dependent on observational research, patient data derived from the healthcare system and from volunteers participating in cohort studies, often non-selective. Since 25th May 2018, the European General Data Protection Regulation (GDPR) applies to such data. The GDPR focusses on more individual control for data subjects of ‘their’ data. Yet, the GDPR was preceded by a long debate. The research community participated actively in that debate, and as a result, the GDPR has research exemptions as well. Some of those apply directly; other exemptions need to be implemented into national law. Those exemptions will be discussed together with a general outline of the GDPR. I propose a substantive definition of research—absent in the GDPR—which can warrant its special status in the GDPR. The debate is not over yet. Most legal texts exhibit ambiguity and are interpreted against a background of values. In this case, those could be subsumed under informational self-determination versus solidarity and the deeper meaning of autonomy. Values will also guide national implementation and their interpretation. The value of individual control or informational self-determination should be balanced by nuanced visions about our mutual dependency in healthcare, as an ever-learning system, especially in the European solidarity-based healthcare systems. Good research governance might be a way forward to escape the consent or anonymise dichotomy.

DISCONTOOLS supplement: Current research gaps for advancing control of infectious diseases in production animals.

DISCONTOOLS (DISease CONtrol TOOLS) is an open-access database to assist public and private funders of animal health research in identifying research gaps and planning future research. This database is supported by a range of national funders of animal health research in Europe, with industry providing secretariat support. Information in the database is generated by disease-specific expert groups. In this DISCONTOOLS Supplement, contributing experts expanded their gap analyses into review papers for 15 diseases, covering zoonotic, production and epizootic diseases. Across this diverse array of diseases, it is clear that fundamental research on host-pathogen relationships and immune responses remains critical for evidence-based development of novel vaccines, pharmaceuticals and diagnostics to improve animal health. Furthermore, it is also obvious that there is need to better utilize economics and knowledge regarding "human factors" to optimise uptake and use of a broad range of tools and insights.

Samoprocenjeno zdravstveno stanje odraslih osoba na Kosovu i Metohiji

Introduction: A self-assessment health condition provides a general approach to creating a picture of the health status of the population. Aim: The aim of the paper is to show the connection between different categories of self-assessed health with socio-demographic characteristics, risk factors and with the presence of one or more chronic non-communicable disease of adults in Serbian communities in Kosovo and Metohia. Method: The research was carried out as a cross section study. As an instrument for data collection, the questionnaire was applied in the 2013 Survey of the Health of the Population of Serbia (excluding Kosovo and Metohija), which is in line with the European Health Research Questionnaire. For the purposes of our research, the following variables were used; gender, age, education, working status, marital status, the presence of chronic non-communicable diseases, smoking, alcohol use and physical activity. Results: A total of 1067 respondents (51.3% of women) responded, with an average age of 42.2 (± 16.0) years. Most respondents in the survey found that they feel very good or good, a quarter of the middle (not bad or good), while their condition was poor or very poor assessed by just under 5% of respondents. Among the respondents who rated their health condition as poor or very poor, there were significantly more female respondents, middle age and 65 years of age. Also, people with primary and secondary education, economically inactive, and who are inclined to the sedentary way of life, have a poor picture of their health. The frequency of people who assess their health status as bad or very bad is the highest among respondents with two or more chronic diseases. Conclusion: Different categories of self-assessment health show a tendency to connect with different individual characteristics of adult respondents. Our results can help in creating a strategy of action and building preventive programs in a defined area.

Reinhard Busse: leader in Germany's health-system development

Reinhard Busse: leader in Germany's health-system development

Personalized Medicine in Europe.

Personalised medicine is a promising new concept for dealing with challenges of health and health systems. With the launch of the International Consortium of Personalised Medicine, which brings together health research funders and policy making organisations, European countries aim to coordinate research and health policy to advance the implementation of personalised medicine. This article is protected by copyright. All rights reserved

An Evaluation of 20 Years of EU Framework Programme-Funded Immune-Mediated Inflammatory Translational Research in Non-Human Primates.

Aging western societies are facing an increasing prevalence of chronic inflammatory and degenerative diseases for which often no effective treatments exist, resulting in increasing health-care expenditure. Despite high investments in drug development, the number of promising new drug candidates decreases. We propose that preclinical research in non-human primates can help to bridge the gap between drug discovery and drug prescription. Translational research covers various stages of drug development of which preclinical efficacy tests in valid animal models is usually the last stage. Preclinical research in non-human primates may be essential in the evaluation of new drugs or therapies when a relevant rodent model is not available. Non-human primate models for life-threatening or severely debilitating diseases in humans are available at the Biomedical Primate Research Centre (BPRC). These have been instrumental in translational research for several decades. In order to stimulate European health research and innovation from bench to bedside, the European Commission has invested heavily in access to non-human primate research for more than 20 years. BPRC has hosted European users in a series of transnational access programs covering a wide range of research areas with the common theme being immune-mediated inflammatory disorders. We present an overview of the results and give an account of the studies performed as part of European Union Framework Programme (EU FP)-funded translational non-human primate research performed at the BPRC. These data illustrate the value of translational non-human primate research for the development of new therapies and emphasize the importance of EU FP funding in drug development.

Horizon 2020 priorities in clinical mental health research: results of a consensus-based ROAMER expert survey.

Within the ROAMER project, which aims to provide a Roadmap for Mental Health Research in Europe, a two-stage Delphi survey among 86 European experts was conducted in order to identify research priorities in clinical mental health research. Expert consensus existed with regard to the importance of three challenges in the field of clinical mental health research: (1) the development of new, safe and effective interventions for mental disorders; (2) understanding the mechanisms of disease in order to be able to develop such new interventions; and (3) defining outcomes (an improved set of outcomes, including alternative outcomes) to use for clinical mental health research evaluation. Proposed actions involved increasing the utilization of tailored approaches (personalized medicine), developing blended eHealth/mHealth decision aids/guidance tools that help the clinician to choose between various treatment modalities, developing specific treatments in order to better target comorbidity and (further) development of biological, psychological and psychopharmacological interventions. The experts indicated that addressing these priorities will result in increased efficacy and impact across Europe; with a high probability of success, given that Europe has important strengths, such as skilled academics and a long research history. Finally, the experts stressed the importance of creating funding and coordinated networking as essential action needed in order to target the variety of challenges in clinical mental health research.

Assessing and Improving the Quality of Food Composition Databases for Nutrition and Health Applications in Europe: The Contribution of EuroFIR

Food composition databases (FCDBs) form an integral part of nutrition and health research, patient treatment, manufacturing processes, and consumer information. FCDBs have traditionally been compiled at a national level; therefore, until recently, there was limited standardization of procedures across different data sets. Digital technologies now allow FCDB users to access a variety of information from different sources, which has emphasized the need for greater harmonization. The European Food Information Resource (EuroFIR) Network of Excellence and Nexus projects (2005–2013) has been instrumental in addressing differences in FCDBs and in producing standardized protocols and quality schemes to compile and manage them. A formal, recognized European standard for food composition data has been prepared, which will further assist in the production of comparable data. Quality schemes need to address both the composition data, plus the methods of sampling, analysis, and calculation, and the documentation of processes. The EuroFIR data exchange platform provides a wealth of resources for composition compilers and end users and continues to develop new and innovative tools and methodologies. EuroFIR also is working in collaboration with the European Food Safety Authority, and as a partner in several European projects. Through such collaborations, EuroFIR will continue to develop FCDB harmonization and to use new technologies to ensure sustainable future initiatives in the food composition activities that underpin food and health research in Europe.

The state of the art in European research on reducing social exclusion and stigma related to mental health: a systematic mapping of the literature.

Stigma and social exclusion related to mental health are of substantial public health importance for Europe. As part of ROAMER (ROAdmap for MEntal health Research in Europe), we used systematic mapping techniques to describe the current state of research on stigma and social exclusion across Europe. Findings demonstrate growing interest in this field between 2007 and 2012. Most studies were descriptive (60%), focused on adults of working age (60%) and were performed in Northwest Europe-primarily in the UK (32%), Finland (8%), Sweden (8%) and Germany (7%). In terms of mental health characteristics, the largest proportion of studies investigated general mental health (20%), common mental disorders (16%), schizophrenia (16%) or depression (14%). There is a paucity of research looking at mechanisms to reduce stigma and promote social inclusion, or at factors that might promote resilience or protect against stigma/social exclusion across the life course. Evidence is also limited in relation to evaluations of interventions. Increasing incentives for cross-country research collaborations, especially with new EU Member States and collaboration across European professional organizations and disciplines, could improve understanding of the range of underpinning social and cultural factors which promote inclusion or contribute toward lower levels of stigma, especially during times of hardship.

Public mental health research in Europe: a systematic mapping for the ROAMER project.

As part of the ROAMER (ROAdmap for MEntal health Research in Europe) project, aiming to create an integrated European roadmap for mental health research, we set out to map the hitherto unmapped territory of public mental health research in Europe. Five electronic databases (CINAHL, Health Management, Medline, PsycINFO, Social Services Abstracts) were used for identifying public mental health research articles published between January 2007 and April 2012. The number of publications for each European country in five research domains (i.e. mental health epidemiology, mental health promotion, mental disorder prevention, mental health policy and mental health services) was analysed by population size and gross domestic product (GDP), and mean impact factors were compared. In all, 8143 unique publications were identified. Epidemiology research dominates public mental health research, while promotion, prevention and policy research are scarce. Mental health promotion is the fastest growing research area. Research targeting older adults is under-represented. Publications per capita were highest in northwestern Europe, and similar trends were found also when adjusting the number of publications by GDP per capita. The most widely cited research origins from Italy, Switzerland, the UK, the Nordic countries, the Netherlands, Greece and France. In Europe, public mental health research is currently a matter of the affluent northern and western European countries, and major efforts will be needed to promote public mental health research in south and east Europe. In spite of a smaller public mental health research output, some Mediterranean countries produce highly cited public mental health research.

EPA-1441 - Should social psychiatry be a priority in mental health research?

Introduction Further to the recent debate about the future and the identity of psychiatry, we argue that social psychiatry will play a major role in psychiatric research and practice in the future. Aims To report priority areas in mental health research according to different categories of European stakeholders and to analyze pitfalls in training in social psychiatry. Objectives To review the current state of knowledge on social psychiatry and to propose future actions for research and practice in mental health. Methods In this presentation we will report data from the ROAMER stakeholders’ survey on priorities for mental health research in Europe according to the national associations of psychiatrists, other mental health professionals, users and/or carers, trainees in psychiatry, and the results from the activities of the European Psychiatric Association - Early Career Psychiatrists Committee (EPA-ECPC). Results Social psychiatry is a priority in mental health research according to all categories of stakeholders. In particular, the most important research areas indicated by the 108 respondents are early detection and management of mental disorders, quality of mental health services, prevention of mental disorders, rehabilitation and social inclusion, and stigma and discrimination. According to the survey carried out by EPAECPC, social psychiatry, psychopathology and forensic psychiatry are the areas most neglected during training Conclusions Our results show the general tendency that social psychiatry is a priority in mental health research and training. Actions should be taken as soon as possible in order to: a) fight stigma; b) improve employment rates of mentally ill; c) develop strategies to manage migrants’ psychiatric problems; d) improve quality of mental health services; e) promote mental health in the population.