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Health-RI demonstrator projects and data champions: the FAIR principles put into practice
An important part of realising any kind of data sharing initiative is making the data FAIR (Findable Accessible Interoperable and Reusable, see also our FAIR data implementation page). When you start making your data FAIR, and realise what it means in practice, it can feel as an overwhelming task. There are many projects out there however that show that making data FAIR is possible and worthwhile.
Making data FAIR is an important part of our endeavour at Health-RI of setting up a national infrastructure for sharing health data. As a first step we are gathering information on projects that already implemented FAIR principles successfully. There is a lot that can be learned from these initiatives: what problems did they have, how did they solve them, what benefits did the FAIRification have, what kind of experts were involved and what did they learn from the process.
We call these projects “demonstrators” and have published the first of hopefully many of such projects in a portfolio on our website.
By gathering and sharing these stories, best practices will emerge, which are the basis for other activities within our FAIR Data implementation team, for instance:
- creating training materials;
- finding generally used metadata standards;
- identifying and describing general steps for making data FAIR.
Currently two projects are featured in the portfolio: the Duchenne Data Platform and the Vascular Anomalies Registry (VASCA). Both projects are on rare diseases. Making data FAIR is vital in the rare disease domain as there is less data to begin with. Other projects from other domains are in the pipeline for the portfolio and will be published continuously.
Linked to these projects are experts or “data champions”. These persons have experience with putting the FAIR principles into practice and are willing to share their knowledge and educate others. They also illustrate the types of expertise and knowledge needed to conduct certain activities in making data FAIR.
So, check out our first demonstrator projects and the linked data champions. Contact us if you feel a certain project needs to be included as a demonstrator (use the demonstrator registration form) or as a data champion (use the data champion registration form).
Newsworthy:
Regular activity updates are being sent to FAIR Coordinators and the wider nodes teams.
Looking back at 2022 within the Health-RI FAIR Data Implementation team.