National data opt out

 

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Currently, NHS Digital are implementing a new national data collection system. This new system will be made up of solely pseudonymised patient data. This means that none of our patients can be identified as individuals and such data which can identify you is replaced by a de-identification code.

You have the option to opt-out of your data being shared with NHS Digital in this way. We recommend all patients to read through the information on this page and to visit the links enclosed before filling out the Type-1 Data Opt Out form.

 

The NHS collects confidential patient information from:

  • all NHS organisations, trusts and local authorities (including GP surgeries)
  • private organisations, such as private hospitals providing NHS funded care
 

Research bodies and organisations can request access to this information. This includes:

  • university researchers
  • hospital researchers
  • medical royal colleges
  • pharmaceutical companies researching new treatments

Access to confidential patient information will not be given for:

  • marketing purposes
  • insurance purposes
 

How confidential patient information is protected

Your confidential patient information is looked after in accordance with good practice and the law.

Every organisation that provides health and care services will take every step to:

  • keep data secure
  • use data that cannot identify you whenever possible
  • use data to benefit health and care
  • not use data for marketing or insurance purposes (unless you request this)
  • make it clear why and how data is being used

All NHS organisations must provide information on the type of data they collect and how it’s used. Data release registers are published by NHS Digital and Public Health England, showing records of the data they have shared with other organisations.

There is no deadline for patients or public to opt-out of sharing your data for planning and research. The deadline of 30 September 2021 was only ever for health and social care organisations, which need to get ready to manage national data opt-out requests from patients.

Since the launch of the national data-opt-out in May 2018, NHS Digital and a number of other organisations have been upholding the opt-out.

NHS DIGITAL GUIDANCE FOR PATIENTS

 

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The data held in your GP medical records is shared with other healthcare professionals for the purposes of your individual care. It is also shared with other organisations to support health and care planning and research.

If you do not want your personally identifiable patient data to be shared outside of your GP practice for purposes except 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 may be discontinued in the future. If this happens then they may be turned into a National Data Opt-out. Your GP practice will tell you if this is going to happen and if you need to do anything. More information about the National Data Opt Out

You can use this form to:

  • Register a Type 1 Opt-out, for yourself or for a dependent (if you are the parent or legal guardian of the patient) (to Opt-out)
  • withdraw an existing Type 1 Opt-out, for yourself or a dependent (if you are the parent or legal guardian of the patient) if you have changed your preference ( to Opt-in )

This decision will not affect individual care and you can change your choice at any time, using this form.

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