National Data & Type 1 Data Gathering information and Opt Out

What patient data we collect

This collection will start from 1 July 2021. Patient data will be collected from 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 the data collection started, and was previously registered at a GP practice in England when the data collection started

We will not collect your name or where you live. Any other data that could directly identify you, for example NHS number, General Practice Local Patient Number, full postcode and date of birth, 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 no one will be able to directly identify you in the data. The diagram below helps to explain what this means. Using the terms in the diagram, the data we collect would be described as de-personalised.

NHS Digital will only collect structured and coded data from patient medical records that is needed for specific health and social care purposes explained above.

Data that directly identifies you as an individual patient, including your NHS number, General Practice Local Patient Number, full postcode, date of birth and if relevant date of death, is replaced with unique codes produced by de-identification software before it is sent to NHS Digital. This means that no one will be able to directly identify you in the data.

NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify you in certain circumstances, and where there is a valid legal reason. This would mean that the data became personally identifiable in the diagram above. It will still be held securely and protected, including when it is shared by NHS Digital. 

For more information please click on the following links:

PRIVACY NOTICE

TRANSPARENCY NOTICE

OPTING OUT

Type 1 opt out form

National Data Opt Out


In May 2018, the strict rules about how this data can and cannot be used were strengthened. The NHS is committed to keeping patient information safe and always being clear about how it is used.

 
How your data is used


Your health and care information is used to improve your individual care. It is also used to help us research new treatments, decide where to put GP clinics and plan for the number of doctors and nurses in your local hospital. Wherever possible we try to use data that does not identify you, but sometimes it is necessary to use your confidential patient information


What is confidential patient information?


Confidential patient information identifies you and says something about your health, care or treatment. You would expect this information to be kept private. Information that only identifies you, like your name and address, is not considered confidential patient information and may still be used: for example, to contact you if your GP practice is merging with another.


Who can use your confidential patient


It is used by the NHS, local authorities, university and hospital researchers, medical colleges and pharmaceutical companies researching new treatments.


Making your data opt-out choice


You can choose to opt out of sharing your confidential patient information for research and planning. There may still be times when your confidential patient information is used: for example, during an epidemic where there might be a risk to you or to other people’s health. You can also still consent to take part in a specific research project.


Will choosing this opt-out affect your care and treatment?


No, your confidential patient information will still be used for your individual care.

 

Choosing to opt out will not affect your care and treatment. You will still be invited for screening

services, such as screenings for bowel cancer.


What should you do next?


You do not need to do anything if you are happy about how your confidential patient information is used. If you do not want your confidential patient information to be used for research and planning, you can choose to opt out securely online or through a telephone service. You can change your choice at any time by visiting:

https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/ (this link will open in a new window - popups must be allowed) or telephone 0300 303 567



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