Data stewardship as described in this handbook is adequate because it is based on the FAIR Principles, which have been adopted worldwide. It is natural because it fits in the research environment of University Medical Centres (UMCs) in the Netherlands.
The NFU prescribes that data stewardship at the Dutch UMCs should adhere to the FAIR Principles and comply with HANDS.
The FAIR Principles recommend that all research data should be Findable, Accessible, Interoperable and Reusable, for both machines and people:
To explain the F and A of FAIR, one can draw a comparison with the worldwide web. People from all over the world can generate websites. You can find and access these websites using a browser. So, the internet makes data Findable and Accessible. Similarly, UMCs can load their research data to secure internet sites, making the data findable and accessible to researchers at other hospitals.
However, the information on a website can have any format. For instance, the language may be Italian or Chinese, or people may use synonyms. This also applies to clinical data sets. For cancer of the larynx, doctors in Leiden may use ‘larynxcarcinoom’, whereas doctors in Maastricht may use ‘strottenhoofdkanker’. To make sure that the data relate to the same disease, we can use a medical ontology such as the ‘international classification of diseases’ (ICD). In the ICD version 11, cancer of the larynx has received the code 2C23. If we use this code when uploading data from patients with ‘larynxcarcinoom’ in Leiden and ‘strottenhoofdkanker’ in Maastricht, suddenly a non-Dutch speaking scientist and even a computer can understand that the patients on the secure internet site have larynx cancer. This is a crucial step to achieve data interoperability and reusability (The I and R of FAIR).
HANDS’ toolbox contains an overview of data-related courses.
A minimal step towards FAIRness is to provide the data set, as an entity in its own right, with a PID that is not only intrinsically persistent, but also persistently linked to the data set (research object) it identifies. However, without machine-readable metadata it will still be difficult to find the data, unless one knows the PID. So a PID is necessary, but not sufficient.