National data opt-outs: How does this apply to CRANE?

The national data opt-out service allows patients to opt-out of their confidential patient information being used for purposes other than their immediate clinical care. All NHS organisations are required to be compliant with the national data opt-out policy.

Guidance on the deadline for compliance and how to comply is provided on the NHS website:

For national clinical audits such as the CRANE, where families consent to the audit function of CRANE, cleft teams are advised to:

  • Change patients’ consent status to ‘No’ if the parents/patient chooses to opt-out of their information being used for audit purposes.

Remember that CRANE also has a registry function as well. Therefore there is a minimum dataset that CRANE is allowed to collect, on all children born with a cleft, under our Section 251 approval. For a reminder of these data items please consult the CRANE Data Dictionary found in the Resources section of this website.

If you would like further information on how cleft teams can ensure they are compliant with the national data opt-out, specifically with regard to the CRANE, please do contact us with your questions in advance of the 31 March 2022 deadline. You can do this by contacting us.