Mapping European research networks providing health data: results from the InfAct Joint Action on health information.
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ABSTRACT: Background
Research networks offer multidisciplinary expertise and promote information exchange between researchers across Europe. They are essential for the European Union's (EU) health information system as providers of health information and data. The aim of this mapping exercise was to identify and analyze EU research networks in terms of health data collection methods, quality assessment, availability and accessibility procedures.Methods
A web-based search was performed to identify EU research networks that are not part of international organizations (e.g., WHO-Europe, OECD) and are involved in collection of data for health monitoring or health system performance assessment. General characteristics of the research networks (e.g., data sources, representativeness), quality assessment procedures, availability and accessibility of health data were collected through an ad hoc extraction form.Results
Fifty-seven research networks, representative at national, international or regional level, were identified. In these networks, data are mainly collected through administrative sources, health surveys and cohort studies. Over 70% of networks provide information on quality assessment of their data collection procedures. Most networks share macrodata through articles and reports, while microdata are available from ten networks. A request for data access is required by 14 networks, of which three apply a financial charge. Few networks share data with other research networks (8/49) or specify the metadata-reporting standards used for data description (9/49).Conclusions
Improving health information and availability of high quality data is a priority in Europe. Research networks could play a major role in tackling health data and information inequalities by enhancing quality, availability, and accessibility of health data and data sharing across European networks.
SUBMITTER: Unim B
PROVIDER: S-EPMC8744039 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe InfAct (Information for Action) is a Joint Action of the European Commission's 3rd Health Programme with the main goal to build an infrastructure of a health information system for a stronger European Union and to strengthen its core elements. The InfAct Joint Action was developed along 36 months and structured in 10 work packages. Portugal co-led the Work Package 6 (WP6) of this project, which included the development of the proposal of a flagship capacity building programme - the European Health Information Training Programme - and its evaluation. The evaluation objectives included: to evaluate the adequacy of the training programme to the health information needs in the European Member States; to identify possible changes regarding the participants selection process, the training activities and the pedagogical project; and to contribute to the understanding of the potential of the programme to add to available offers in learning on the topics of Public Health information, on the capacity building and behavioural changes in Public Health activities which can be attributed to the course, and of the potential of the programme to contribute to the alignment of health information criteria and procedures between the European Member States.MethodsThe evaluation process was developed using an observational descriptive study design using a mixed methodological approach with both document analysis and primary data collected by questionnaires and interviews analysis. Mixed quantitative and qualitative data collection methods and analysis were used.ResultsThe proposal of the European Health Information Training Programme seemed adequate to the formative needs and capacities in line with the work performed by the InfAct project. In what concerns about its main thematic areas, it was also aligned with the areas identified in the previous formative needs and capacities mapping. The participants selection process proposed seemed, in general, adequate. The potential of the European Health Information Training Programme proposal to learning, capacity building and behavioral changes at work attributable to the course was considered positive, as well as the potential to the alignment of health information criteria and procedures between European Union Member States.DiscussionIn general, we found high consistency between the results obtained from data collected by the techniques used. However, different suggestions for improvement were outlined by the evaluation study population.ConclusionsThe proposed European Health Information Training Programme was a dynamic, flexible, sustainable formative programme in health information and focused on reducing inequalities.
| S-EPMC9076499 | biostudies-literature
Project description:UnlabelledBackgroundHealth Examination Surveys (HESs) can provide essential information on the health and health determinants of a population, which is not available from other data sources. Nevertheless, only some European countries have systems of national HESs. A study conducted in 2006-2008 concluded that it is feasible to organize national HESs using standardized measurement procedures in nearly all EU countries. The feasibility study also outlined a structure for a European Health Examination Survey (EHES), which is a collaboration to organize standardized HESs in countries across Europe.To facilitate setting up national surveys and to gain experience in applying the EHES methods in different cultures, EHES Joint Action (2010-2011) planned and piloted standardized HESs in the working age population in 12 countries. This included countries with earlier national HESs and countries which were planning their first national HES. The core measurements included in all surveys were weight, height, waist circumference and blood pressure, and blood samples were taken to measure lipid profiles and glucose or glycated haemoglobin (HbA1c). These are modifiable determinants of major chronic diseases not identified in health interview surveys. There was a questionnaire to complement the data on the examination measurements.MethodsEvaluation of the pilot surveys was based on review of national manuals and evaluation reports of survey organizers; observations and discussions of survey procedures during site visits and training seminars; and other communication with the survey organizers.ResultsDespite unavoidable differences in the ways HESs are organized in the various countries, high quality and comparability of the data seems achievable. The biggest challenge in each country was obtaining high participation rate. Most of the pilot countries are now ready to start their full-size national HES, and six of them have already started.ConclusionsThe EHES Pilot Project has set up the structure for obtaining comparable high quality health indicators on health and important modifiable risk factors of major non-communicable diseases from the European countries. The European Union is now in a key position to make this structure sustainable. The EHES core survey can be expanded to cover other measurements.
| S-EPMC3508610 | biostudies-literature
Project description:BackgroundTo examine and compare the research productivity on selected fields related to health literacy of the current members of the European Union, the four candidate countries waiting to join the EU, Norway, Switzerland, and the United States.Methodology/principal findingsA bibliometric analysis (1991-2005). Data sources included papers published by authors from each country separately. The 25 European countries produce less than 1/3 health literacy research when compared to the U.S. (13,710 and 49,523 articles were published by authors with main affiliation in the European Union and the four candidate countries, and the U.S., respectively). The Netherlands and Sweden (followed by Germany, Italy, and France) are the European countries with the highest number of research published in fields related to health literacy. After adjustment for population Sweden, Finland, and Norway, were on the top of the relevant list. In addition, Sweden, Finland, and Ireland, were on the top of the list of countries regarding research productivity on the selected fields after adjustment for gross domestic product (GDP).Conclusions/significanceInequalities in research published on the topic of health literacy exist among Europe, Norway, Switzerland, and the U.S. More research may need to be done in all areas of health literacy in Europe and the potential detrimental effects of this gap should be further investigated.
| S-EPMC2424242 | biostudies-literature
Project description:BackgroundHealth-related data are collected from a variety of sources for different purposes, including secondary use for population health monitoring (HM) and health system performance assessment (HSPA). Most of these data sources are not included in databases of international organizations (e.g., WHO, OECD, Eurostat), limiting their use for research activities and policy making. This study aims at identifying and describing collection methods, quality assessment procedures, availability and accessibility of health data across EU Member States (MS) for HM and HSPA.MethodsA structured questionnaire was developed and administered through an online platform to partners of the InfAct consortium form EU MS to investigate data collections applied in HM and HSPA projects, as well as their methods and procedures. A descriptive analysis of the questionnaire results was performed.ResultsInformation on 91 projects from 18 EU MS was collected. In these projects, data were mainly collected through administrative sources, population health interview or health examination surveys and from electronic medical records. Tools and methods used for data collection were mostly mandatory reports, self-administered questionnaires, or record linkage of various data sources. One-third of the projects shared data with EU research networks and less than one-third performed quality assessment of their data collection procedures using international standardized criteria. Macrodata were accessible via open access and reusable in 22 projects. Microdata were accessible upon specific request and reusable in 15 projects based on data usage licenses. Metadata was available for the majority of the projects, but followed reporting standards only in 29 projects. Overall, compliance to FAIR Data principles (Findable, Accessible, Interoperable, and Reusable) was not optimal across the EU projects.ConclusionsData collection and exchange procedures differ across EU MS and research data are not always available, accessible, comparable or reusable for further research and evidence-based policy making. There is a need for an EU-level health information infrastructure and governance to promote and facilitate sharing and dissemination of standardized and comparable health data, following FAIR Data principles, across the EU.
| S-EPMC8728985 | biostudies-literature
Project description:Many joint actions require task partners to temporally coordinate actions that follow different spatial patterns. This creates the need to find trade-offs between temporal coordination and spatial alignment. To study coordination under incongruent spatial and temporal demands, we devised a novel coordination task that required task partners to synchronize their actions while tracing different shapes that implied conflicting velocity profiles. In three experiments, we investigated whether coordination under incongruent demands is best achieved through mutually coupled predictions or through a clear role distribution with only one task partner adjusting to the other. Participants solved the task of trading off spatial and temporal coordination demands equally well when mutually perceiving each other's actions without any role distribution, and when acting in a leader-follower configuration where the leader was unable to see the follower's actions. Coordination was significantly worse when task partners who had been assigned roles could see each other's actions. These findings make three contributions to our understanding of coordination mechanisms in joint action. First, they show that mutual prediction facilitates coordination under incongruent demands, demonstrating the importance of coupled predictive models in a wide range of coordination contexts. Second, they show that mutual alignment of velocity profiles in the absence of a leader-follower dynamic is more wide-spread than previously thought. Finally, they show that role distribution can result in equally effective coordination as mutual prediction without role assignment, provided that the role distribution is not arbitrarily imposed but determined by (lack of) perceptual access to a partner's actions.
| S-EPMC6446186 | biostudies-literature
Project description:Previous research has identified a number of coordination processes that enable people to perform joint actions. But what determines which coordination processes joint action partners rely on in a given situation? The present study tested whether varying the shared visual information available to co-actors can trigger a shift in coordination processes. Pairs of participants performed a movement task that required them to synchronously arrive at a target from separate starting locations. When participants in a pair received only auditory feedback about the time their partner reached the target they held their movement duration constant to facilitate coordination. When they received additional visual information about each other's movements they switched to a fundamentally different coordination process, exaggerating the curvature of their movements to communicate their arrival time. These findings indicate that the availability of shared perceptual information is a major factor in determining how individuals coordinate their actions to obtain joint outcomes.
| S-EPMC4918098 | biostudies-literature
Project description:Over 24 million international visitors came to Japan in 2016 and the number is expected to increase. Visitors could be at a risk of illness or injury that may result in hospitalization in Japan. We assessed the effects of a four-minute digital animation titled Mari Info Japan on the level of anxiety experienced by international visitors to Japan.We conducted a non-randomized, controlled study at Narita International Airport outside Tokyo in December 2014. On the first day, we recruited international visitors for the intervention group at predetermined departure gates and, the following day, we sampled visitors for the control group at the same gates. We repeated this procedure twice over 4 days. The intervention group watched the digital animation and the control group read a standard travel guidebook in English. After receiving either intervention, they completed a questionnaire on their level of anxiety. The outcome was assessed using the Mari Meter-X, The State-Trait Anxiety Inventory Form Y (STAI-Y), and a face scale, before and immediately after the intervention. We analyzed data with Wilcoxon rank sum tests.We recruited 265 international visitors (134 in the intervention group, 131 in the control group), 241 (91%) of whom completed the questionnaire. Most of them had no previous Japanese health information before arrival in Japan. The level of anxiety about health services in Japan was significantly reduced in the intervention group (Mari Meter-X median: -?5 and 0, p?<?0.001 and STAI-Y median: -?3 and 0, p?<?0.001). The face scale analysis showed no significant difference.Watching a digital animation is more effective in reducing anxiety among international visitors to Japan compared with reading a standard brochure or guidebook. Such effective animations of health information should be more widely distributed to international visitors.UMIN-CTR (University Hospital Medical Information Network Center Clinical Trials Registry), UMIN000015023 , September 3, 2014.
| S-EPMC5963085 | biostudies-other
Project description:BackgroundE-mental healthcare is the convergence of digital technologies with mental health services. It has been developed to fill a gap in healthcare for people who need mental wellbeing support that may not otherwise receive psychological treatment. With an increasing number of e-mental healthcare and research, this study aimed to investigate the trends of an e-mental health research field that integrates interdisciplinary fields and to examine the information technologies is being used in mental healthcare. To achieve the research objectives, bibliometric analysis, information extraction, and network analysis were applied to analyze e-mental health research data.MethodsE-mental health research data were obtained from 3663 bibliographic records from the Web of Science (WoS) and 3172 full-text articles from PubMed Central (PMC). The text mining techniques used for this study included bibliometric analysis, information extraction, and visualization.ResultsThe e-mental health research topic trends primarily involved e-health care services and medical informatics research. The clusters of research comprised 16 clusters, which refer to mental sickness, e-health, diseases, information technology (IT), and self-management. The information extraction analysis revealed a triple relation with IT and biomedical domains. Betweenness centrality was used as a measure of network graph centrality, based on the shortest path to rank the important entities and triple relation; nodes with higher betweenness centrality had greater control over the network because more information passes through that node. The IT entity-relations of "mobile" had the highest score at 0.043466. The top pairs were related to depression, mobile health, and text message.ConclusionsE-mental related publications were associated with various research fields, such as nursing, psychology, medical informatics, computer science, telecommunication, and healthcare innovation. We found that trends in e-mental health research are continually rising. These trends were related to the internet of things (IoT) and mobile applications (Apps), which were applied for mental healthcare services. Moreover, producing AI and machine learning for e-mental healthcare were being studied. This work supports the appropriate approaches and methods of e-mental health research that can help the researcher to identify important themes and choose the best fit with their own survey work.
| S-EPMC8787445 | biostudies-literature
Project description:BackgroundSensorimotor communication is frequently observed in complex joint actions and social interactions. However, it remains challenging to explore the cognitive foundations behind sensorimotor communication.MethodsThe present study extends previous research by introducing a single-person baseline condition and formulates two distinct categories of asymmetric joint action tasks: distance tasks and orientation tasks. This research investigates the action performance of 65 participants under various experimental conditions utilizing a 2 (cooperative intention: Coop, No-coop) × 2 (task characteristic: distance, orientation) × 4 (target: T1, T2, T3, T4) repeated-measures experimental design to investigate the cognitive mechanisms underlying sensorimotor communication between individuals.ResultsThe results showed that (1) target key dwell time, motion time, total motion time, and maximum motion height in the Coop condition are more than in the No-coop condition. (2) In the distance task without cooperative intention, the dwell time of T4 is smaller than T1, T2, T3, and its variability of T1, T2, T3, and T4 were no different. In the distance task with cooperative intention, the dwell time and its variability of T1, T2, T3, and T4 displayed an increasing trend. (3) In the orientation task without cooperative intention, the dwell time of T1 is smaller than T2, T3, T4, and variability of the target keys T1, T2, T3, and T4 had no difference. In the orientation task with cooperative intention, the dwell time and variability of the target keys T1, T2, T3, and T4 had increasing trends.ConclusionsThose findings underscore the importance of cooperative intention for sensorimotor communication. In the distance task with cooperative intention, message senders establish a mapping relationship characterized by "near-small, far-large" between the task distance and the individual's action characteristics through sensorimotor experience. In the orientation task with cooperative intention, message senders combined sensorimotor experience and verbal metaphors to establish a mapping relationship between task orientation and action characteristics, following the sequence of "left-up, right-up, left-down, right-down" to transmit the message to others.
| S-EPMC10789189 | biostudies-literature
Project description:ObjectivesThis research studied hospital administrators' and hospital-based health care providers' (collectively, the target group) perceived value of consumer health information resources and of librarians' roles in promoting health information literacy in their institutions.MethodsA web-based needs survey was developed and administered to hospital administrators and health care providers. Multiple health information literacy curricula were developed. One was pilot-tested by nine hospital libraries in the United States and Canada. Quantitative and qualitative methods were used to evaluate the curriculum and its impact on the target group.ResultsA majority of survey respondents believed that providing consumer health information resources was critically important to fulfilling their institutions' missions and that their hospitals could improve health information literacy by increasing awareness of its impact on patient care and by training staff to become more knowledgeable about health literacy barriers. The study showed that a librarian-taught health information literacy curriculum did raise awareness about the issue among the target group and increased both the use of National Library of Medicine consumer health resources and referrals to librarians for health information literacy support.ConclusionsIt is hoped that many hospital administrators and health care providers will take the health information literacy curricula and recognize that librarians can educate about the topic and that providers will use related consumer health services and resources.
| S-EPMC2759165 | biostudies-literature