The aim of this work package is to build the Health Information Portal on health and health care data for COVID-19 to support structured information exchange between European countries. The portal will offer a FAIR catalogue with overviews of COVID-19 population health data sources, studies and capacity building exercises in the framework of PHIRI and beyond. The important tool to provide the necessary information is the network of National Nodes (NN), based on the Joint Action InfAct framework.
The objectives of this WP are:
- To create a FAIR catalogue,
- To promote and coordinate the sustainable network of NN,
- To prepare an overview of population health studies and capacity building activities in European countries, and
- To prepare guidelines and recommendations for legal and ethical issues.
Please have a look at our Documentation and user guide for the Health Information Portal. Metadata description. (1.0), (2022) here on Zenodo.
- Authors: Tolonen, Hanna, Mäkinen, Mari, Bogaert, Petronille, Dupbresse, Pierre, Lang, Robert, Lapão, Luis, Palmieri, Luigi, Peyroteo, Mariana, Saso, Miriam, Schutte, Nienke, Unim, Brigid, & Zeletel, Metka
Task 4.1: FAIR Catalogue
Building on the work of InfAct and in close interaction with other important partners such as the ECDC and JRC a FAIR metadata catalogue is being created to describe COVID-19 population health data sources in European countries and at international level. In a first step, metatemplates were created organising and describing national data sources available in countries and Europe. In a second step, through a web search, national COVID-19 data portals were searched to pre-fill the metadata templates and in preparation for the country visits organised in Task 3.1. Currently, through the NN and country visits, European countries are supported to complete the FAIR metadata catalogue and provide inputs on optimisation of the Health Information Portal.
Task 4.2: National node Coordination and Promotion
The Joint Action InfAct has prepared a framework to overcome a lack of coordination, communication and cooperation between stakeholders within Europe by encouraging them to establish NNs. A National Node brings together relevant national stakeholders in an organised way. Researchers from various institutes and research groups constitute can then share expertise and updated knowledge on health information with each other. PHIRI continues this work in implementation of NN framework by encouraging their set-up and further promotion.
Task 4.3: COVID-19 Population Health Studies
This task is preparing a catalogue of scientific population health studies on the impact of COVID-19 in Europe; clinical trials are not included. A catalogue containing metadata information such as type of study, geographical coverage-national or subnational, data sources, target population indicators, etc. will be shortly provided on the Health Information Portal.
Information available on COVID-19 Population Health Studies will be updated stimulating the Institutes to keep the information up to date and motivating researchers to fill in the catalogue (stressing the opportunity of sharing, comparing, setting up studies already implemented in other countries). For the sustainability of the catalogue, validation of reported information on identified studies will be regularly performed and checked with researchers stimulating updating of reported information and improving of planned studies.
Task 4.4: COVID-19 Training Material and Courses
This task is developing an overview of existing training materials and courses on COVID-19 population health related issues. The catalogue will cover both European and non-European materials and address different languages.
Such information is already available on the Health Information Portal. However, the list will be expanded greately during the course of the project. Additionally, this task is also responsible for the various capacity building activities within the different PHIRI's WPs, ensuring their alignment and complementarity. This task leverages on the work done in InfAct and has a strong connection with the future of DIPoH and the European Health Data Space, where it will constitute one of the building blocks.
- The European School of Health Information - One pager
- The European School of Health Information - Training material
Task 4.5: Ethical and Legal Aspects
This task is developing an overview of existing practices and guidelines on ethical and legal aspects of performing and exchanging health information on COVID-19. The task will provide recommendations how to transfer these learnings into a specific common guidance for practical implementation affecting deployment, utilisation and governance of the Health Information Portal.
The leader and co-leader to this work package are: