The NHS Data Scrape

The current NHS Digital (NHSD) extract of GP data for Research purposes (known as the GPDPR) has been delayed due to NHSD wishing to review the way in which this data will be collected, to conduct more public involvement and information about the plans and change the way in which patients can opt out of the extract of their GP data.

 

Currently the only way to opt out is to complete a Type 1 opt out form and return this to the practice by the 1^st September.  However, this extract will not be taken until the NHSD have changed the way it will take the data and respect the patient’s choice for using their data.  NHSD are introducing the following changes to the opt out process which will mean that patients will be able to change their opt-out status at any time::-

• Patients do not need to register a Type 1 opt-out by 1st September to ensure their GP data will not be uploaded.

 

• NHS Digital will create the technical means to allow GP data that has previously been uploaded to the system via the GPDPR collection to be deleted when someone registers a Type 1 opt-out.

 

• The plan to retire Type 1 opt-outs will be deferred for at least 12 months while we get the new arrangements up and running and will not be implemented without consultation with the RCGP, the BMA and the National Data Guardian. 

This means that you can opt out at any time in the future and NHSD will delete data that they already have taken for research purposes, the deadline of the 01/09/2021 has been delayed until a new system of opt out is developed.  Hopefully, this will be a simple centralised approach via the NHS app or NHS website to avoid paper form and administration work for your GP.

 

We will update you when we know more about the NHSD plans to change how you can control who has access to your data.

This page is in relation to the GPDfPR that you will have seen over the past few weeks. 

Please read the following section to understand how your data is used. If you are wanting to view the opt out form, this can found underneath the document. Please read thoroughly and follow the instructions carefully. 

 

Please note, in order to Opt-Out Nationally, you will need to visit the following website: https://www.nhs.uk/your-nhs-data-matters/

Dear patient,

We have been asked to share the following important information with you. 

This practice is supporting vital health and care planning and research by sharing your data with NHS Digital. For more information about this see the GP Practice Privacy Notice for General Practice Data for Planning and Research." =

 

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research

 

This collection will start on 1 September 2021

If you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with your GP practice.

 

What data is shared:

Data may be shared from the GP medical records about:

• any living patient registered at a GP practice in England when the collection started - this includes children and adults
• any patient who died after 1 September 2021, and was previously registered at a GP practice in England when the data collection started

NHS Digital will not collect patients’ names or addresses. Any other data that could directly identify patients (such as NHS Number, date of birth, full postcode) is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.

This process is called pseudonymisation and means that patients will not be identified directly in the data. NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason.

If you would prefer that your identifiable patient data is only shared for your own health care purposes, you can opt-out by registering a Type 1 Opt-out or a National Data Opt-out, or both.

 These opt-outs are different and they are explained in more detail below. Your individual care will not be affected if you opt-out using either option (or both).

A Type 1 opt out has to be registered by your Practice; please let us know if you want to register a type 1 opt out.   

A National Opt out can be done without contacting your practice, at https://www.nhs.uk/your-nhs-data-matters/

 

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

NHSD will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice. More information about Type 1 Opt-outs is in the GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice.

This collection will start on 1 September 2021 so if you do not want your data to be shared with NHS Digital, please register your Type 1 Opt-out with your GP practice.

If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with NHSD. They will however still hold the patient data which was shared before you registered the Type 1 Opt-out.

If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.

 

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

NHSD will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.

NHS Digital won’t share any confidential patient information about you - this includes GP data, or other information, such as hospital data - with other organisations, unless there is an exemption to this.

To find out more information and how to register a National Data Opt-Out, please read NHSD GP Data for Planning and Research Transparency Notice.

= https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice