General Practice Data for Planning and Research (GPDfPR)

8 June 2021

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.

The new data collection reduces burden on GP practices, allowing doctors and other staff to focus on patient care.

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.

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:

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.

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.

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?

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.

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 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 from your GP Practice

PLEASE NOTE: Patients registered with us have been opted-out of data sharing by the Practice. You do not need to take any further action unless you would like to opt-in to data sharing with NHS Digital for research and planning. If so please contact the Practice (by email wherever possible).

National Data Opt-out (previously Type 2 Opt-out)

The national data opt-out is a service that allows patients to opt out of their confidential patient information from any source (GP, hospital, social care etc.) being used for research and planning.

National data opt-outs are not recorded at the GP practice. Instead you can change your national data opt-out using the online service or by telephone.

If you do not want NHS Digital to share your identifiable patient data (collected from any source) with anyone else for purposes beyond your own care, then you can register at:

https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/

Or you can make or change a choice by phoning the NHS Digital Contact Centre on:

0300 303 5678 – Monday to Friday, 9am to 5pm (excluding bank holidays).

How do I opt out for my child?

You can register a National Data Opt-Out for any child under 13 years of age. A child is able to set their own opt-out from age 13, which aligns with the minimum age at which children can give their consent to participate in digital services as set out in data protection legislation.