Future location in general Health-RI wiki: child of /wiki/spaces/VD/pages/155751454
STATUS: UNDER DEVELOPMENT
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The ultimate goal of the Health-RI data infrastructure is the reuse of valuable health data. Making data FAIR (Findable, Accessible, Interoperable and Reusable) is integrated in the architectural design and in all the processes surrounding the infrastructure.
Data that will be included in the Health-RI infrastructure needs to meet certain requirements: technical, ethical and FAIR related. These requirements are closely related to each other and will sometimes even overlap. The FAIR requirements cover amongst others metadata definitions, accessibility processes definitions, standards used for the coding of data, license definitions for reuse of data etc. We are currently in the process of defining these requirements.
In this section you can find background information on FAIR, for a broad audience, but also detailed information on what FAIR data means in the context of the Health-RI data infrastructure and for funders such as ZonMw and KWF.
Further elaboration of this page and children pages will follow in future.
In the Health-RI FAIR Data Implementation team we work on 3 different themes, together with professionals from the regional nodes (such as Data Stewards):
Below you find more details on these activities.
You can find more /wiki/spaces/FSD/pages/163119105
Making data FAIR
Developing shared work processes and standards
As the build of the infrastructure progresses, definitions of the (FAIR) requirements, including the (meta)data standards used, and process descriptions will develop along side of it.
Currently we are working on the Metadata Core definition (page is in development) and on the process for onboarding (meta)data into the national Health-RI infrastructure.
Furthermore, we are developing the FAIRification Metroline (steps involved in making data FAIR) and scenarios, which help you reach a predefined FAIRification goal.
Training and Capacity Building
Building expertise among data professionals
We are developing materials and training which will be shared in future in the Health-RI Training Catalog.
Next to that, community building is an also important activity, for example for Data Steward in the existing Health-RI Data Stewardship Community and the national Data Stewards Interest Group.Â
FAIR advocacy
Creating awareness of the importance of FAIR data
There are a lot of benefits from implementing the FAIR principles, but not everybody is yet convinced of investing time and effort. Our FAIR advocacy activities are focused on increasing the awareness of stakeholders of the importance of FAIR data.
Another way of showing the value of FAIR is by presenting examples of projects which already implement FAIR principles successfully. These projects are featured in our Demonstrator Portfolio.
FAIR data in funded health research projects
Funders, such as ZonMw, KWF and Health~Holland, recognize the need for effective collaboration around a robust national health data infrastructure for the (re)use of FAIR (meta)data. They are incorporating the FAIR principles in their requirements more and more. You can read more on this in this statement (in Dutch).
Health-RI is setting up /wiki/spaces/FSD/pages/33816783for making data FAIR together with funders, which are valuable for their projects but also for other researchers interested in making their data more FAIR.
Within the health sector there currently is no coordinated way to exchange relevant metadata between (research) organisations. The current capturing and connecting of data is fragmented and not equipped to effectively combine and analyse different data sources.
Making data FAIR helps optimizing reuse of data. Health-RI is working with funders in the health sector to align requirements and offer services when it comes to FAIRification of the data their granted projects are producing.