NHS Digital GP Data for Planning and Research

NHS Digital has engaged with the British Medical Association (BMA), Royal College of GPs (RCGP) and the National Data Guardian (NDG) to ensure relevant safeguards are in place for patients and GP practices.

Why NHS Digital collects general practice data

NHS Digital is the national custodian for health and care data in England and has responsibility for standardising, collecting, analysing, publishing and sharing data and information from across the health and social care system, including general practice.

NHS Digital collected patient data from general practices using a service called the General Practice Extraction Service (GPES), which has operated for over 10 years and now needs to be replaced.

NHS Digital has engaged with doctors, patients, data and governance experts to design a new approach to collect data from general practice that:

• reduces burden on GP practices
• explains clearly how data is used
• supports processes that manage and enable lawful access to patient data to improve health and social care

What the data will be used for

Patient data collected from general practice is needed to support a wide variety of research and analysis to help run and improve health and care services. Whilst the data collected in other care settings such as hospitals is valuable in understanding and improving specific services, it is the patient data in general practice that helps us to understand whether the health and care system as a whole is working for patients.

In addition to replacing what GPES already does, the General Practice Data for Planning and Research service will also help to support the planning and commissioning of health and care services, the development of health and care policy, public health monitoring and interventions (including coronavirus (COVID-19) and enable many different areas of research, for example:

1. Research the long-term impact of coronavirus on the population

There is a lot about coronavirus that we do not know, including the long-term health impacts. Patient data from GP medical records will be very important in the coming months and years, as scientists analyse and understand the impact of the virus on human health.

2. Analyse healthcare inequalities

For example, to understand how people of different ethnicities access healthcare and how the outcomes of particular groups compare to the rest of the population. This will help the NHS to assess healthcare inequalities and make any necessary changes to its services.

3. Research and develop cures for serious illnesses

For example, patient data is being used by the University of Oxford RECOVERY trial, which has found ways to improve the treatment for people with coronavirus.

Researchers have previously used patient data from GP medical records to show that there was no association between the measles, mumps and rubella vaccine and the development of autism; to confirm the safety of the meningococcal group B vaccine; and to investigate whether certain medications increase the risk of cancer.

What data is shared

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.

NHS Digital will collect:

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

NHS Digital does not collect:

• name and address (except for postcode, protected in a 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

Opting out

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 in the opt out form. Your individual care will not be affected if you opt-out using either option.

Data Sharing Opt Out Form