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NHS – National data opt-out programme

by in Data, GDPR

National data opt-out programme’(Time to read: 2 minutes)

Maybe we should refer to the 25th May 2018 as Data Day? Why, you ask? Well, two things came into effect on this day, and whilst the GDPR has taken centre stage recently and organisations have been busy preparing for the Regulation which became applicable as law on Friday 25th May 2018, another data-related programme came into effect too.

The 25th May 2018 also saw the introduction of the NHS ‘National data opt-out programme’; this is a service that enables data subjects to opt out of having their data shared for research and/or planning purposes. Practices should have been informed of this by letter.

The national data opt-out service replaces the Type 2 opt-out system and any of your patients who had elected to opt out will automatically be transferred to the national data opt-out service as of 25th May 2018. Patients will be advised of the change and will receive a letter and leaflet, which explain the ‘National data opt-out programme’ in greater detail.

What about existing Type 1 opt-outs? What do we need to do for them? Existing Type 1 opt-outs will remain effective until 2020; at this stage it’s expected that the Department of Health and Social Care (DHSC) will engage with the National Data Guardian as to how these opt-outs can be managed and removed.

What do practices need to do?

You need to understand the opt-out service as this will enable your team to support your patients effectively. For staff, direct them to read the fact sheets, and to prepare the practice, use the GP checklist which has been provided by NHS Digital. As with the GDPR, the 25th May 2018 is not the definitive deadline, but rather the starting point of a journey which practices must undertake to ensure the opt-out service is implemented in their practices. Further guidance and time frames will be issued to practices in due course by NHS(E).

What do you need to do for your patients?

You should inform them and ensure that your policies have been updated to reflect the national data opt-out service. Encourage patients to access and read the available resources using the following link: www.nhs/uk/your-nhs-data-matters

Place posters in prominent locations within your practice, update your practice website and involve your PPG.

As of March 2020, all patients will be able to access an online service to understand exactly how their data has been used for reasons other than the provision of direct care.

A cleverly coordinated launch date or merely coincidence? One thing is for sure, ‘Data Day’ sees significant changes to the way in which patient data is handled across the healthcare sector.

Please note, if any of the above links do not work this is because the NHS Digital link will change every time a resource is updated. If the links do not work please find the latest versions of the documents on the following pages:

This is the resource page for the posters.

This is the resource page for the checklist.


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2 Responses to “NHS – National data opt-out programme”
  1. Avatar
    Kath Ali Says:

    Thanks for this concise but easily understood update-much clearer than some other reports I have read!


  2. Avatar
    Julie Fenton Says:

    Ive have been dealing with NHS England on this one and our practice is going to be used as a test site to make sure the system works. Unfortunately they haven’t tested it out yet and have until September to make sure whatever they put on the patient record does prevent data being shared for research and planning!!!! I am booked in for a webinar meeting with them next week. If there is anything interesting I will post in the general forum


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