Your Data Matters to the NHS
Information about your health and care helps us to improve your individual care, speed up diagnosis, plan your local services and research new treatments. The NHS is committed to keeping patient information safe and always being clear about how it is used.
How your data is used
Information about your individual care such as treatment and diagnoses is collected about you whenever you use health and care services. It is also used to help us and other organisations for research and planning such as research into new treatments, deciding where to put GP clinics and planning for the number of doctors and nurses in your local hospital. It is only used in this way when there is a clear legal basis to use the information to help improve health and care for you, your family and future generations. Wherever possible we try to use data that does not identify you, but sometimes it is necessary to use your confidential patient information.
You have a choice
You do not need to do anything if you are happy about how your information is used. If you do not want your confidential patient information to be used for research and planning, you can choose to opt out securely online or through a telephone service. You can change your mind about your choice at any time.
Will choosing this opt-out affect your care and treatment?
No, choosing to opt out will not affect how information is used to support your care and treatment. You will still be invited for screening services, such as screenings for bowel cancer.
What do you need to do?
If you are happy for your confidential patient information to be used for research and planning, you do not need to do anything. To find out more about the benefits of data sharing, how data is protected, or to make/change your opt-out choice visit www.nhs.uk/your-nhs-data-matters
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.
NHS Digital will only collect structured and coded data from patient 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. This would mean that the data became personally identifiable in the diagram above. It will still be held securely and protected, including when it is shared by NHS Digital.
NHS Digital will collect:
- 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
More detailed information about the patient data NHS Digital will collect is contained in the Data Provision Notice issued to GP practices.
NHS Digital will not collect:
- 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
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)
NHS Digital will not collect data from GP practices about patients who have registered a Type 1 Opt-out with their practice. More information about Type 1 Opt-outs is in GP Data for Planning and Research Transparency Notice.
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 people who have registered a Type 1 Opt-out will be informed. More about National Data Opt-outs is in the section below.
NHS Digital will not collect any patient data for patients who have already registered a Type 1 Opt-out in line with current policy and your data will not be shared with NHS Digital.
If you do not want your patient data shared with NHS Digital, 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 July 2021.
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 23 June 2021 to allow time for processing it. 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.
National Data Opt-out (opting out of NHS Digital sharing your data)
This applies to identifiable patient data about your health, which is called confidential patient information. If you don’t want your confidential patient information to be shared by NHS Digital for purposes except your own care – either GP data, or other data we hold, 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 your 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 GP practices 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.
PLEASE NOTE that the national data opt out choice is set directly by the patient, either online or via supported national telephone service without the involvement of the General Practice.
Click here to download the Type 1 Opt-out form