National Core Studies Data Sharing Principles
The National Core Studies have committed to a set of principles to enable delivery and share data in a way which builds public trust:
- Work collaboratively to actively share data to allow the scientific community to pool expertise, draw fresh insights, and increase our collective understanding.
- Ensure unconsented data is accessed through secure platforms accredited or working towards accreditation by the UK Statistics Authority to comply standards established according to Digital Economy Act requirements, or working towards this status, which allows insights to be generated whilst maintaining privacy and data security.
- Demonstrate active and ongoing engagement with patients and the public in the design, development and governance of their activities, to provide assurance that these activities are in the public interest.
- Be transparent in the use of personal data and respect the privacy and confidentiality of individuals, complying with legal requirements and ethical expectations at all times.
- Make research outputs, observations, code and tools generated from the studies open-source, rapidly and freely accessible as a public good.
- Ensure all data and associated code and tools generated through the studies are Findable, Accessible, Interoperable and Reusable (FAIR).
- Demonstrate value for money by using existing UK infrastructure and research investments as far as possible and using open competitions where necessary to develop new infrastructure capability.