The National Data Opt-Out
for use by clinical teams
What is the National Data Opt-out ?
The national data opt-out was introduced on 25 May 2018, enabling patients to opt out from the use of their non-GP (i.e. hospital and clinics) data for research or planning purposes, in line with the recommendations of the National Data Guardian in her Review of Data Security, Consent and Opt-Outs.
This includes submission to the IBD Registry (where the patient has not consented to this use).
The authoritative source for this is NHS Digital, who have published a comprehensive set of information on the data opt-out on their website. We have published this summary guidance page with links to support and assist teams in finding this information, including guidance on data submission (below).
Note: to try to help avoid confusion, there is a separate and different opt-out, called a Type-1 Opt-out for patients to use to opt out of their GP data being extracted for the proposed GPDPR (General practice data for planning and research). See NHS Digital for more information.
I am a patient and would like to know more
Our guidance in this section is aimed primarily at clinical teams who participate in the IBD Registry.
For patients, NHS Digital have a set of pages here designed for patients on the national opt out.
The NHS Digital pages also allow you to make your choice on whether to allow your personal information to be used for planning and research purposes.
We have also put more information on this under our ‘Patient’ pages
Frequently asked questions for clinical teams
How does our Trust comply with the national opt-out ?
There is a comprehensive set of guidance and templates available to assist with this. Please see this page at NHS Digital
What is the deadline for compliance ?
The NHS Digital guidance (on their website) says:
“The deadline for health and care organisations to comply with national data opt-out policy is now 30 September 2021. It has been extended to enable health and care organisations to focus their resources on the coronavirus (COVID-19) outbreak”.
Does the national opt-out apply to paediatric patients ?
We asked NHS Digital this question on your behalf. Their response is:
“The national data opt-out applies to all patients. It is not possible for children under 13 to set their own opt-out but a parent or proxy can register one on their behalf. The opt-out applies to data where the data being shared is ‘confidential patient information’ and has approval from the Confidentiality Advisory Group (CAG). This approval is known as section 251 approval. Therefore the opt-out doesn’t apply to data which is used for direct care, where data has explicit consent, or where the data is flowing under ‘Direction’ or legally mandated (ie. flows to NHS Digital). It also doesn’t apply where the data is anonymised.”
How does this affect my IBD Registry submission ?
IBD Teams submitting data to the Registry should read our updated guidance on what this means to ensure compliance with patient data preferences.
How does the national opt-out interact with patient consent for the IBD Registry ?
The national opt-out allows patients to opt-out of their personal information being used for planning and research purposes without their consent. This may take place in a number of different areas. A patient can opt-out generally (‘across the board’) while consenting specifically to activities that they are happy for their data to be used for. So if a patient has consented specifically for the IBD Registry while also opting-out nationally, their consent allows their data to be shared with us.
Can the IBD Registry remove patients who have opted-out ?
Not as part of data sharing with the Registry. If a patient has opted-out and has not consented to join the IBD Registry, then their data must not be shared with us.
Is this UK-wide ?
From NHS Digital’s website guidance for patients: “your choice will only apply to the health and care system in England. This does not apply to health or care services accessed in Scotland, Wales or Northern Ireland