scholarly journals Health data collection methods and procedures across EU member states: findings from the InfAct Joint Action on health information

2022 ◽  
Vol 80 (1) ◽  
Author(s):  
Brigid Unim ◽  
Eugenio Mattei ◽  
Flavia Carle ◽  
Hanna Tolonen ◽  
Enrique Bernal-Delgado ◽  
...  

Abstract Background Health-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. Methods A 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. Results Information 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. Conclusions Data 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.

2019 ◽  
Vol 29 (Supplement_4) ◽  
Author(s):  
B Unim ◽  
E Mattei ◽  
F Carle ◽  
E Bernal-Delgado ◽  
P Achterberg ◽  
...  

Abstract Background Data collection methods, metadata-reporting standards and usage of data for health monitoring (HM) and health system performance assessment (HSPA) are not uniform in Europe. Moreover, the evidence produced by research are not always available, comparable or usable for research purposes and policy making. The aim is to summarize health data collection methods, quality assessment, availability and accessibility procedures covering different data sources for HM and HSPA across EU countries. Methods The study is conducted through a multidimensional approach, which includes: i) a review of institutional websites (OECD, Eurostat, WHO-Europe); ii) a review of EU research networks; and iii) a multi-national survey addressing epidemiologists, health data managers and researchers that have played leading roles in EU projects. Currently, the survey instrument is being piloted. A qualitative data analysis to describe and compare the identified data sources for HM and HSPA will be performed. Results As part of the work within the Joint Action ‘Information for Action’ (InfAct), the study will generate knowledge on standardized health data collections and related metadata, used methods and procedures for HM and HSPA in EU. It will also facilitate the identification of national or sub-national health data collected through standardized procedures but not included in international databases or research networks. Conclusions The lack of infrastructures for health data sharing in EU limits data usage and comparability within and between countries. This study, as part of InfAct, will facilitate the assessment of health inequalities across EU countries in terms of quality, availability, accessibility and comparability of health data and information. It will also facilitate sharing and dissemination of standardized and comparable health data collections, which are essential for research and evidence-based policy-making.


Author(s):  
Catherine Eastwood ◽  
Keith Denny ◽  
Maureen Kelly ◽  
Hude Quan

Theme: Data and Linkage QualityObjectives: To define health data quality from clinical, data science, and health system perspectives To describe some of the international best practices related to quality and how they are being applied to Canada’s administrative health data. To compare methods for health data quality assessment and improvement in Canada (automated logical checks, chart quality indicators, reabstraction studies, coding manager perspectives) To highlight how data linkage can be used to provide new insights into the quality of original data sources To highlight current international initiatives for improving coded data quality including results from current ICD-11 field trials Dr. Keith Denny: Director of Clinical Data Standards and Quality, Canadian Insititute for Health Information (CIHI), Adjunct Research Professor, Carleton University, Ottawa, ON. He provides leadership for CIHI’s information quality initiatives and for the development and application of clinical classifications and terminology standards. Maureen Kelly: Manager of Information Quality at CIHI, Ottawa, ON. She leads CIHI’s corporate quality program that is focused on enhancing the quality of CIHI’s data sources and information products and to fostering CIHI’s quality culture. Dr. Cathy Eastwood: Scientific Manager, Associate Director of Alberta SPOR Methods & Development Platform, Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB. She has expertise in clinical data collection, evaluation of local and systemic data quality issues, disease classification coding with ICD-10 and ICD-11. Dr. Hude Quan: Professor, Community Health Sciences, Cumming School of Medicine, University of Calgary, Director Alberta SPOR Methods Platform; Co-Chair of Hypertension Canada, Co-Chair of Person to Population Health Collaborative of the Libin Cardiovascular Institute in Calgary, AB. He has expertise in assessing, validating, and linking administrative data sources for conducting data science research including artificial intelligence methods for evaluating and improving data quality. Intended Outcomes:“What is quality health data?” The panel of experts will address this common question by discussing how to define high quality health data, and measures being taken to ensure that they are available in Canada. Optimizing the quality of clinical-administrative data, and their use-value, first requires an understanding of the processes used to create the data. Subsequently, we can address the limitations in data collection and use these data for diverse applications. Current advances in digital data collection are providing more solutions to improve health data quality at lower cost. This panel will describe a number of quality assessment and improvement initiatives aimed at ensuring that health data are fit for a range of secondary uses including data linkage. It will also discuss how the need for the linkage and integration of data sources can influence the views of the data source’s fitness for use. CIHI content will include: Methods for optimizing the value of clinical-administrative data CIHI Information Quality Framework Reabstraction studies (e.g. physician documentation/coders’ experiences) Linkage analytics for data quality University of Calgary content will include: Defining/measuring health data quality Automated methods for quality assessment and improvement ICD-11 features and coding practices Electronic health record initiatives


2022 ◽  
Vol 80 (1) ◽  
Author(s):  
Brigid Unim ◽  
Elsi Haverinen ◽  
Eugenio Mattei ◽  
Flavia Carle ◽  
Andrea Faragalli ◽  
...  

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.


2012 ◽  
Vol 153 (43) ◽  
pp. 1692-1700
Author(s):  
Viktória Szűcs ◽  
Erzsébet Szabó ◽  
Diána Bánáti

Results of the food consumption surveys are utilized in many areas, such as for example risk assessment, cognition of consumer trends, health education and planning of prevention projects. Standardization of national consumption data for international comparison is an important task. The intention work began in the 1970s. Because of the widespread utilization of food consumption data, many international projects have been done with the aim of their harmonization. The present study shows data collection methods for groups of the food consumption data, their utilization, furthermore, the stations of the international harmonization works in details. The authors underline that for the application of the food consumption data on the international level, it is crucial to harmonize the surveys’ parameters (e.g. time of data collection, method, number of participants, number of the analysed days and the age groups). For this purpose the efforts of the EU menu project, started in 2012, are promising. Orv. Hetil., 2012, 153, 1692–1700.


2019 ◽  
Author(s):  
Charlotte Moore ◽  
Shannon Dailey ◽  
Hallie Garrison ◽  
Andrei Amatuni ◽  
Elika Bergelson

Around their first birthdays, infants begin to point, walk, and talk. These abilities are appreciable both by researchers with strictly standardized criteria and caregivers with more relaxed notions of what each of these skills entails. Here we compare the onsets of these skills and links among them across two data collection methods: observation and parental report. We examine pointing, walking, and talking in a sample of 44 infants studied longitudinally from 6–18 months. In this sample, links between pointing and vocabulary were tighter than those between walking and vocabulary, supporting a unified socio-communicative growth account. Indeed, across several cross-sectional and longitudinal analyses, pointers had larger vocabularies than their non-pointing peers. In contrast to previous work, this did not hold for walkers’ vs. crawlers’ vocabularies in our sample. Comparing across data sources, we find that reported and observed estimates of the growing vocabulary and of age of walk onset were closely correlated, while agreement between parents and researchers on pointing onset and talking onset was weaker. Taken together, these results support a developmental account in which gesture and language are intertwined aspects of early communication and symbolic thinking, whereas the shift from crawling to walking appears indistinct from age in its relation with language. We conclude that pointing, walking, and talking are on similar timelines yet distinct from one another, and discuss methodological and theoretical implications in the context of early development.


Author(s):  
Abrar Alturkistani ◽  
Ching Lam ◽  
Kimberley Foley ◽  
Terese Stenfors ◽  
Elizabeth R Blum ◽  
...  

BACKGROUND Massive open online courses (MOOCs) have the potential to make a broader educational impact because many learners undertake these courses. Despite their reach, there is a lack of knowledge about which methods are used for evaluating these courses. OBJECTIVE The aim of this review was to identify current MOOC evaluation methods to inform future study designs. METHODS We systematically searched the following databases for studies published from January 2008 to October 2018: (1) Scopus, (2) Education Resources Information Center, (3) IEEE (Institute of Electrical and Electronic Engineers) Xplore, (4) PubMed, (5) Web of Science, (6) British Education Index, and (7) Google Scholar search engine. Two reviewers independently screened the abstracts and titles of the studies. Published studies in the English language that evaluated MOOCs were included. The study design of the evaluations, the underlying motivation for the evaluation studies, data collection, and data analysis methods were quantitatively and qualitatively analyzed. The quality of the included studies was appraised using the Cochrane Collaboration Risk of Bias Tool for randomized controlled trials (RCTs) and the National Institutes of Health—National Heart, Lung, and Blood Institute quality assessment tool for cohort observational studies and for before-after (pre-post) studies with no control group. RESULTS The initial search resulted in 3275 studies, and 33 eligible studies were included in this review. In total, 16 studies used a quantitative study design, 11 used a qualitative design, and 6 used a mixed methods study design. In all, 16 studies evaluated learner characteristics and behavior, and 20 studies evaluated learning outcomes and experiences. A total of 12 studies used 1 data source, 11 used 2 data sources, 7 used 3 data sources, 4 used 2 data sources, and 1 used 5 data sources. Overall, 3 studies used more than 3 data sources in their evaluation. In terms of the data analysis methods, quantitative methods were most prominent with descriptive and inferential statistics, which were the top 2 preferred methods. In all, 26 studies with a cross-sectional design had a low-quality assessment, whereas RCTs and quasi-experimental studies received a high-quality assessment. CONCLUSIONS The MOOC evaluation data collection and data analysis methods should be determined carefully on the basis of the aim of the evaluation. The MOOC evaluations are subject to bias, which could be reduced using pre-MOOC measures for comparison or by controlling for confounding variables. Future MOOC evaluations should consider using more diverse data sources and data analysis methods. INTERNATIONAL REGISTERED REPORT RR2-10.2196/12087


Author(s):  
Tapio Raunio

This chapter examines the relationship between European integration and democracy. The continuous transfer of policy-making powers from European Union (EU) member states to the European level has raised serious concerns about democratic legitimacy. The chapter assesses the claims that European integration undermines national democracy, and that decision-making at the EU level is not sufficiently democratic. It argues that while significant challenges remain, European integration has definitely become more democratic over the years. But there is perhaps a trade-off, with stronger input legitimacy potentially an obstacle to efficient European-level decision-making. It also underlines the multilevel nature of the EU polity and the importance of public debates about European integration.


Al-Qalam ◽  
2019 ◽  
Vol 25 (2) ◽  
pp. 421
Author(s):  
Khaerun Nisa'

This study aims to determine the process of implementation the <em>parunrungi baju </em>and <em>attarasa’s </em>tradition in the Konjo community adult process, how is the existance of the <em>parunrungi baju </em>and <em>attarasa’s </em>tradition in the modern area, and how is the islamic perspective on the procession of tradition. The type of this research is qualitative descriptive research. Data sources are primary and secondary data. Researcher as a key instrument. Data collection methods are observation, deep interview and documentation. <em>Parunrungi baju </em>and <em>attrarasa’s </em>tradition is a traditional ceremony held by Konjo community in eastern Bulukumba, when  a child enters adulthood. The traditional still exists carried out by the community of Konjo until now, as a way to appreciate the ancestrals heritage. According to the islamic perpective on the procession of the traditional ceremonies, such as the presentation of offerings and flattening of teeth <em>(attarasa)</em> is considered contradictory to the existing rules in islam.<br /><p align="center"> </p>


Sign in / Sign up

Export Citation Format

Share Document