Data Opt Out: Type 1 & National
Updated On June 8, 2021
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
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)
We 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 our GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice.
We 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 our GP Data for Planning and Research Transparency Notice, including a form that you can complete and send to your GP practice.
This collection will start on 1 July 2021 so if you do not want your data to be shared with NHS Digital please register your Type 1 Opt-out with your GP practice by 23 June 2021.
If you register a Type 1 Opt-out after this collection has started, no more of your data will be shared with us. We will however still hold the patient data which was shared with us before you registered the Type 1 Opt-out.
If you do not want NHS Digital to share your identifiable patient data with anyone else for purposes beyond your own care, then you can also register a National Data Opt-out.
National Data Opt-out (opting out of NHS Digital sharing your data)
We will collect data from GP medical records about patients who have registered a National Data Opt-out. The National Data Opt-out applies to identifiable patient data about your health, which is called confidential patient information.
NHS Digital won’t share any confidential patient information about you – this includes GP data, or other data we hold, such as hospital data – with other organisations, unless there is an exemption to this.
Links
GP Practice Data for Planning & Research: Privacy Notice
https://www.nhs.uk/your-nhs-data-matters/
https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/transparency-notice#opting-out-of-nhs-digital-collecting-your-data-type-1-opt-out-
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
Download a copy of the patient leaflet