How sharing patient data with NHS Digital helps the NHS and you
The NHS needs data about the patients it treats in order to plan and deliver its services and to ensure that care and treatment provided is safe and effective. The General Practice Data for Planning and Research data collection will help the NHS to improve health and care services for everyone by collecting patient data that can be used to do this. For example patient data can help the NHS to:
- monitor the long-term safety and effectiveness of care
- plan how to deliver better health and care services
- prevent the spread of infectious diseases
- identify new treatments and medicines through health research
GP practices already share patient data for these purposes, but this new data collection will be more efficient and effective.
We have agreed to share the patient data we look after in our practice with NHS Digital who will securely store, analyse, publish and share this patient data to improve health and care services for everyone. This includes:
- informing and developing health and social care policy
- planning and commissioning health and care services
- taking steps to protect public health (including managing and monitoring the coronavirus pandemic)
- in exceptional circumstances, providing you with individual care
- enabling healthcare and scientific research
This means that we can get on with looking after our patients and NHS Digital can provide controlled access to patient data to the NHS and other organisations who need to use it to improve health and care for everyone.
Contributing to research projects will benefit us all as better and safer treatments are introduced more quickly and effectively without compromising your privacy and confidentiality.
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.
What data is shared about you with NHS Digital
This data will be shared from 1st September 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 this data sharing started, and was previously registered at a GP practice in England when the data collection started
We will not share your name or where you live. Any other data that could directly identify you, for example your NHS number, General Practice Local Patient Number, full postcode and date of birth, is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.
The data we share
We will share structured and coded data from GP medical records that is needed for specific health and social care purposes explained above.
Data that directly identifies you as an individual patient, including your NHS number, General Practice Local Patient Number, full postcode, date of birth and if relevant date of death, is replaced with unique codes produced by de-identification software before it is sent to NHS Digital. This means that no one will be able to directly identify you in the data.
NHS Digital will be able to use the software to convert the unique codes back to data that could directly identify you in certain circumstances, and where there is a valid legal reason. It will still be held securely and protected, including when it is shared by NHS Digital.
We will share:
- data on sex, ethnicity and sexual orientation
- clinical codes and data about diagnoses, symptoms, observations, test results, medications, allergies, immunisations, referrals, recalls and appointments, including information about your physical, mental and sexual health
- data about staff who have treated you
More detailed information about the patient data we collect is contained in the Data Provision Notice issued to GP practices.
What is not shared:
- your name and address (except 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 we are not permitted to share by law – for example certain codes about IVF treatment, and certain information about gender reassignment
If you don’t want your identifiable patient data (personally identifiable data in the diagram above) 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)
If you do not want your identifiable patient data (personally identifiable data in the diagram above) to be shared outside of the GP practice for purposes except your own care, you can register an opt-out with the GP practice. This is known as a Type 1 Opt-out.
Type 1 Opt-outs were introduced in 2013 for data sharing from GP practices, but may be discontinued in the future as a new opt-out has since been introduced to cover the broader health and care system, called the National Data Opt-out. If this happens, patients who have registered a Type 1 Opt-out will be informed. There is more information about National Data Opt-outs below.
NHS Digital will not collect any patient data for patients who have already registered a Type 1 Opt-in line with current policy. If this changes patients who have registered a Type 1 Opt-out will be informed.
If you do not want your patient data shared with NHS Digital for the purposes above, you can register a Type 1 Opt-out with your GP practice. You can register a Type 1 Opt-out at any time. You can also change your mind at any time and withdraw a Type 1 Opt-out.
Data sharing with NHS Digital will start on 1 September 2021.
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 by 1st September 2021. 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 them before you registered the Type 1 Opt-out.
If you do not want NHS Digital to share your identifiable patient data (personally identifiable data in the diagram above) with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out. There is more about National Data Opt-outs and when they apply below.
National Data Opt-out (opting out of NHS Digital sharing your data)
This applies to identifiable patient data about your health (personally identifiable data in the diagram above), which is called confidential patient information. If you don’t want your confidential patient information to be shared by NHS Digital with other organisations for purposes except your own care – either GP data, or other data it holds, such as hospital data – you can register a National Data Opt-out.
If you have registered a National Data Opt-out, NHS Digital won’t share any confidential patient information about you with other organisations, unless there is an exemption to this, such as where there is a legal requirement or where it is in the public interest to do so, such as helping to manage contagious diseases like coronavirus. You can find out more about exemptions on the NHS website.
From 1 October 2021, the National Data Opt-out will also apply to any confidential patient information shared by the GP practice with other organisations for purposes except your individual care. It won’t apply to this data being shared by GP practices with NHS Digital, as it is a legal requirement for us to share this data with NHS Digital and the National Data Opt-out does not apply where there is a legal requirement to share data.
You can find out more about and register a National Data Opt-out, or change your choice on nhs.uk/your-nhs-data-matters or by calling 0300 3035678.
More information on NHS Digital and this collection
You can read more about how NHS Digital uses the patient data we share with them in the NHS Digital General Practice Data for Planning and Research Transparency Notice.