Update 9 June 2021
GENERAL PRACTICE DATA FOR PLANNING & RESEARCH (GPDfPR) DELAYED On Tuesday Health Minister Jo Churchill MP advised the House of Commons that the GPDfPR programme implementation date has been moved back to 1 September 2021 to allow “more time to talk to patients, Drs, and other stakeholders”. This followed protests at the short timescale of setting the programme up by 23rd June and widespread concerns about patient opt outs.
Please note that the practice has been legally required by the Secretary of State to allow the extraction of data by NHS Digital.
NHS Digital is a national agency which is part of the NHS. Its role is to support and develop NHS services using technology and infrastructure for patient care.
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.
Patient data is used every day to improve healthcare services through planning and research in England, helping to find better treatments and improve patient care. It helps to decide what new health and care services are required in a local area, informs clinical guidance and policy, and supports researching and developing cures for serious illnesses, such as heart disease, diabetes and cancer.
The new system for the collection of data is starting on 1 July 2021.
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 and 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
For further information about this process, please visit here.
If you do not want your GP to share your identifiable patient data for purposes except for your own care, you can opt-out by registering a Type 1 Opt-out. This prevents your data being shared with NHS Digital if you register your opt-out before 23 June 2021. You can still register your opt-out at any time after this date and it will prevent any more data being shared with NHS Digital.
A video to explain how the NHS uses information from GP practices to improve health and care services is available here.