NHS Data Opt-Out

The data held in the GP medical records of patients is used every day to support health and care planning and research in England, helping to find better treatments and improve patient outcomes for everyone. NHS Digital has developed a new way to collect this data, called the General Practice Data for Planning and Research data collection.

This data will be shared from 1 July 2021. 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 July 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.

We will collect structured and coded data from patient medical records.

If you don’t want your identifiable patient data to be shared for purposes except for your own care, 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.

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

We will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice.

If you do not want your data to be shared with NHS Digital, fill in and give this ‘Type 1’ form to your GP practice [PDF] – this form allows you to include details for your children and dependants as well. Please register your Type 1 Opt-out form with your GP practice by 23 June 2021.

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

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

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.

To do this, use the NHS Digital’s online National Data Opt-out process – this process only works for individuals aged 13 and over.

If you have children under 13, you need to fill in this form [PDF] and e-mail or post it back to NHS Digital – this form works for both you and your children.

If you have an adult dependant for whom you have legal responsibility, you must use this form [PDF] and send it back to NHS Digital on their behalf.

We 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 data we hold, such as hospital data – with other organisations, unless there is an exemption to this.

There is no deadline for step 2, the National Data Opt-out (i.e. your non-GP data), but the sooner you do it, the sooner it takes effect.

If you don’t have access to a working printer, you can ask the NHS Digital Contact Centre to post you the forms you need. Their phone number is 0300 303 5678 and they are open Monday to Friday, 9am to 5pm (excluding bank holidays), or you can e-mail enquiries@nhsdigital.nhs.uk any time.

None of the choices above will affect your medical care, or the data that is available for your care.