An overview of the FAIR Principles, a set of guidelines published as part of the Data FAIRport initiative, which are intended to enable greater take-up of scientific data by ensuring it can be found and used as a basis for further investigation. It explored the wide range of issues that should be addressed by institutions to ensure health-based data complies with the fair principles. Key topics that were explored include the role of descriptive metadata, persistent identifiers, and data citation standards for enabling discovery of scientific data; challenges associated with providing access to health research, including ensuring informed consent and complying with requirements for protection of personal and sensitive information; health-related standards, such as CDISC and DDI, that may be used to improve data interoperability; and the use of licence models for enabling data re-use.
Future Work
This topic may be developed through practical tutorials and worked examples on the following topics:
- An overview of the DDI Codebook and Lifecycle models and how they may be applied to specific types of health research.
- An overview of the Clinical Data Interchange Standards Consortium (CDISC) and exploration of how the various specification and standards can be applied for specific types of health research
- An assessment of the suitability of different licence models and approaches for health-based research
