GP Data Planning and Research

Advice and Guidance: NHS Digital

NHS Digital is setting up a new data collection service to give planners and researchers access to pseudonymised patient information. This has been directed by the secretary of state for health and social care and is due to begin on 1st September 2021. 

It was prompted by the Covid-19 pandemic which led to a significant increase in the need for GP data to support clinicians, researchers, academics and commissioners.

Patient identifiable will be pseudonymised and then encrypted before it leaves a GP practice.

Data will only be shared with organisations who have a legal basis to use the information for local, regional and national planning, policy development, commissioning, public health and research purposes.

Patients may opt-out by requesting that their GP practice record is not shared, known as a Type 1 opt out, or by registering their opt-out through the National Data Opt Out (see link  below). 

Patient data to be collected

From 1 September 2021, patient data to be collected from GP’s will include: 

  • data on your sex, ethnicity and sexual orientation
  • clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals and recalls, and appointments, including information about your physical, mental and sexual health
  • data about staff who have treated you 

Collected data will include all living patients registered with a GP practice in England as of 1st September 2021 (both children and adults).  It will also include any patients who died after 1st September 2021 when the data collection started, and who were registered with a GP practice in England. 

They will not collect your name or where you live or any other data that could directly identify you, for example your NHS number, General Practice Local Patient Number, full postcode and date of birth.  These identifiers will be 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.  

They will NOT collect the following data: 

  • your name and address (except for your postcode in unique coded form)
  • written notes (free text), such as the details of conversations with doctors and nurses
  • images, letters and documents
  • coded data that is not needed due to its age – for example medication, referral and appointment data that is over 10 years old
  • coded data that GPs are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender re-assignment 

How to opt out

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

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. 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 with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.

For further information: 

General Practice Data for Planning and Research: NHS Digital Transparency Notice - NHS Digital 

 GP data sharing: What is it and can I opt out? (BBC News)