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:
F1. (meta)data are assigned a globally unique and persistent identifier
F2. data are described with rich metadata (defined by R1 below)
F3. metadata clearly and explicitly include the identifier of the data it describes
F4. (meta)data are registered or indexed in a searchable resource
To be Accessible:
A1. (meta)data are retrievable by their identifier using a standardized communications protocol
A1.1 the protocol is open, free, and universally implementable
A1.2 the protocol allows for an authentication and authorization procedure, where necessary
A2. metadata are accessible, even when the data are no longer available
To be Interoperable:
I1. (meta)data use a formal, accessible, shared, and broadly applicable language for knowledge representation.
I2. (meta)data use vocabularies that follow FAIR principles
I3. (meta)data include qualified references to other (meta)data
To be Reusable:
R1. meta(data) are richly described with a plurality of accurate and relevant attributes
R1.1. (meta)data are released with a clear and accessible data usage license
R1.2. (meta)data are associated with detailed provenance
R1.3. (meta)data meet domain-relevant community standards
Fair.healthdata.be was launched on July 7, 2017. This first release (0.1) contained 27,241 records from 2 catalogs: the inventory “AP18” of the Action Plan eHealth 2013-2018 (252 records), and an extract of the European Union Clinical Trials Register (26989 records). It is the ambition to continuously add catalogs, projects and resources, related to Belgian health and health care, to this platform, and to develop taxonomies connecting all these projects and resources.
Open Summer of Code 2018
During the Open Summer of Code (an event of Open Knowledge Belgium) 6 students will work for the “data for better health initiative” and will build further on the FAIR portal and add a lot of visual data stories! Follow them on twitter using #oSoc18.
Open data initiative
Public data belonging to the federal government must be accessible, with a few exceptions based on privacy and security. Transparent access to data means a better democratic process. That is why the federal government started with a roadmap of actions to ensure that this data becomes accessible in a user-friendly manner using an open data portal.
The federal open data strategy includes an ambitious view on open data and several concrete action points by 2020. A bill that supports this strategy and regulates the reuse of government information. The law is at the same time the transposition of the 2013 European PSI Directive, an important part of the European Open Data Strategy and Digital Agenda.