The Provision of Genetic Testing and Related Services in Quebec, Canada
In: Frontiers in Genetics, 2020
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In: Frontiers in Genetics, 2020
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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 ...
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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. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13690-021-00766-2.
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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 ...
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