National data opt-out

The national data opt-out is a service that allows patients to opt out of their confidential patient information being used for research and planning.

NHS Digital Proposals: GP Data for Planning and Research.

The Government has recently enacted a law requiring GPs to send copies of their patient’s records to NHS Digital, where they may be used for research and planning. This will include records going back 10 years and virtually anything new we record about you into the future.

You may be aware through the media about this scheme. This has caused controversy, in particular with regards to the times scale to publicise this change and the lack of national information regarding this.

At a time when GP Practices are extremely busy (currently your practice continues to see about a third higher activity than pre pandemic) the lack of national information has led to a large number of people contacting the surgery in the last week understandably concerned.

As GPs we too have concerns around the implementation of the scheme and would share the points of view expressed in this letter jointly from the British Medical Association and Royal College of GPs to NHS Digital https://www.rcgp.org.uk/-/media/Files/News/rcgp-bma-letter-gpdpr.ashx?la=en

This is a complex area and the web page below from NHS Digital does explain things quite well. https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice#opting-out-of-nhs-digital-collecting-your-data-type-1-opt-out-

Opting out of NHS Digital collecting your data (Type 1 Opt-out)

If you do not want your identifiable patient data to be shared outside of your GP practice for purposes except for your own care, you can register an opt-out with your GP practice. This is known as a Type 1 Opt-out.

Type 1 Opt-outs were introduced in 2013 for data sharing from GP practices, but may be discontinued in the future as a new opt-out has since been introduced to cover the broader health and care system, called the National Data Opt-out. If this happens people who have registered a Type 1 Opt-out will be informed. More about National Data Opt-outs is in the section Who we share patient data with.

NHS Digital will not collect any patient data for patients who have already registered a Type 1 Opt-out in line with current policy. If this changes patients who have registered a Type 1 Opt-out will be informed.

If you do not want your patient data shared with NHS Digital, you can register a Type 1 Opt-out with your GP practice. You can register a Type 1 Opt-out at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out.

A start date for the Data sharing with NHS Digital will be announced.

If you have already registered a Type 1 Opt-out with your GP practice your data will not be shared with NHS Digital.

If you wish to register a Type 1 Opt-out with your GP practice before data sharing starts with NHS Digital, this should be done by returning this form to your GP practice as soon as possible to allow time for processing it. If you have previously registered a Type 1 Opt-out and you would like to withdraw this, you can also use the form to do this. You can send the form by post or email to your GP practice or call 0300 3035678 for a form to be sent out to you.

If you register a Type 1 Opt-out after your patient data has already been shared with NHS Digital, no more of your data will be shared with NHS Digital. NHS Digital will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.

If you do not want NHS Digital to share your identifiable patient data (personally identifiable data in the diagram above) with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out. There is more about National Data Opt-outs and when they apply in the National Data Opt-out section below.

National Data Opt-out (opting out of NHS Digital sharing your data)

This applies to identifiable patient data about your health (personally identifiable data in the diagram above), which is called confidential patient information. If you don’t want your confidential patient information to be shared by NHS Digital for purposes except your own care – GP data, you can register a National Data Opt-out.

If you have registered a National Data Opt-out, NHS Digital won’t share any confidential patient information about you with other organisations unless there is an exemption to this, such as where there is a legal requirement or where it is in the public interest to do so, such as helping to manage contagious diseases like coronavirus. You can find out more about exemptions on the NHS website

You have the choice to stop this happening if you wish but it has to be actioned directly with NHS Digital, we cannot do this for you. To stop data NHS Digital collects on you being used for anything other than direct care go to the NHS Digital web site and search for national opt out. Then scroll to the bottom of the page to read how to action.