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 EU 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 JA 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 MSs, and
- To prepare guidelines and recommendations for legal and ethical issues.
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 will be created to describe COVID-19 population health data sources in EU countries and at international level. In a first step, metatemplates will be 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 will be searched to pre-fill the metadata templates and in preparation for the country visits organised in Task 3.1. Then, through the NN and country visits, EU countries will be supported to complete the FAIR metadata catalogue and provide inputs on optimisation of the portal.
Task 4.2: National node Coordination and Promotion
The JA InfAct has prepared a framework to overcome a lack of coordination, communication and cooperation between stakeholders within MSs 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 will continue 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 will describe and prepare a catalogue of scientific population health studies on the impact of COVID-19 in EU countries; clinical trials and surveillance systems will not be included. A catalogue containing metadata information such as type of study, geographical coverage-national or subnational, data sources, target population indicators, etc. will be provided for the PHIRI 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 will make an overview of existing training materials and courses on COVID-19 population health related issues. It will cover both European and non-European materials and address different languages.
From this exercise, a catalogue will be built and made available through the portal. Additionally, this task will also be responsible for the various capacity building activities within PHIRI 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.
Task 4.5: Ethical and Legal Aspects
This task will overview 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 on health and health care data for information exchange.
The leader and co-leader to this work package are: