This FAIR portal provides an overview of existing databases with health and health care related data and aims to steadily make this data discoverable and available to the public to increase public health knowledge.
Over the past decades, a large number of patient registries and administrative databases have been established in Belgium. Often, few people know about their existence and how to access them. As a result, these databases often have only a limited number of users. Increasing the use of these databases will automatically increase knowledge and innovation in public health. The FAIR principles guide healthdata.be in its ambition to facilitate the re-use of the patient registries and administrative databases in Belgium. Off course with respect for the privacy of the patient, the healthcare professional and the medical confidentiality.
The FAIR guiding principles are the result of a workshop called ‘Jointly Designing a Data Fairport’ with academics and private stakeholders that was held in Leiden (Netherlands) in 2014 . The participants came to the conclusion that a minimal set of guiding principles and practices would help them to more easily discover, access, appropriately integrate and re-use, and adequately cite, the vast quantities of information being generated by contemporary data-intensive science. A draft formulation of a set of foundational principles was elaborated — namely, that all research objects should be Findable, Accessible, Interoperable and Reusable (FAIR) both for machines and for people. These are now referred to as the FAIR Guiding Principles. Subsequently, a dedicated FAIR working group, established by several members of the FORCE11 community 10 , fine-tuned and improved the Principles.
The FAIR Guiding Principles
To be Findable
- (Meta)data are assigned a globally unique and persistent identifier
- Data are described with rich metadata (defined by R1 below)
- Metadata clearly and explicitly include the identifier of the data it describes
- (Meta)data are registered or indexed in a searchable resource
To be Accessible
- (Meta)data are retrievable by their identifier using a standardized communications protocol
- the protocol is open, free, and universally implementable
- the protocol allows for an authentication and authorization procedure, where necessary
- Metadata are accessible, even when the data are no longer available
To be Interoperable
- (Meta)data use a formal, accessible, shared, and broadly applicable language for knowledge representation
- (Meta)data use vocabularies that follow FAIR principles
- (Meta)data include qualified references to other (meta)data
To be Reusable
- Meta(data) are richly described with a plurality of accurate and relevant attributes
- (Meta)data are released with a clear and accessible data usage license
- (Meta)data are associated with detailed provenance
- (Meta)data meet domain-relevant community standards