The journey to set up a European Health Information Portal

InfAct, DIPoH, PHIRI, National Node, European Research Network, health information source, FAIR principle, metadata standards - How did all of them came together and became essentials building blocks of the European health information portal? Hanna Tolonen, a Research Manager at Finnish Institute for Health and Welfare (THL) with 20 years of experience in health research and a key member of the PHIRI project, told us more about her experience on working on the European Health Information Portal in her interview below.
 
"On 31st May 2021, I had the pleasure to introduce the new European Health Information Portal at the virtual launch event. To get to that point, a long journey had already been taken. 
 
The concept of a health information portal was outlined during InfAct (Joint Action on Health Information in 2018-2021) and further developed during the preparation of DIPOH (Distributed Infrastructure on Population Health) and PHIRI (Population Health Information Research Infrastructure) proposals in 2020-2021. The Portal aims to serve as a one-stop-shop for the health information to support high quality research and evidence-informed policy making.

The first modules of the portal were national nodes and European research networks. The structure for these were developed already during the InfAct project, together with the first steps of the technical implementation of the portal. When PHIRI got started, new modules for health information data sources, publications, projects, and capacity building activities were introduced in the portal and work on the technical development was taken to the next level with more resources". 

Hanna then continued to explain the process followed to develop the Portal: "FAIR (findable, accessible, interoperable, and reusable) principle is followed in the portal development. To support this principle, catalogues for data sources, publications, projects, and capacity building activities have been established. The catalogues are built using existing metadata standards (DDI, Dublin core) to support their interoperability with other similar catalogues such as CESSDA Data catalogue or BBMRI-ERIC Directory. 
 
Work on catalogue development has been a joint effort of several PHIRI partners. At first, the content of the catalogues were defined on the ‘drawing board’ including required metadata elements for each catalogue. Metadata elements are those individual information pieces such as name of the data source, years covered with the data source or responsible/contact person for the data source or project. Simultaneously with the metadata work, an internet-based search of data sources, publications, project, and capacity building activities was conducted, and national nodes provided information about their data sources, publications, and projects. Obtained information was recorded using defined metadata definitions to be uploaded to the portal. 
 
In our weekly meetings with the Sciensano ICT team, responsible for the technical implementation of the portal, progress of the portal development is reviewed. We also discuss improvements and possible encountered problems and feedback from the users. As in any portal development, in some weeks we make huge leaps ahead while occasionally we need to take steps back when we realized that our plans as drafted in the drawing board required adjustment to serve the purpose and real features of the collected information.
 
The Health Information Portal will keep developing and more content and material will be added in the future to help researchers and policy makers to find health information data sources, publications, experts in different countries as well as available capacity building activities and European level networks and initiatives".

Hanna Tolonen
Research manager at the Finnish Institute for Health and Welfare (THL), Finland
Leader of the Work Package 4 of PHIRI, dedicated to the Health information Portal