The NHS uses information about patients (patient data) to research, plan and improve services, treatment and care.
Data is collected from your GP surgery, hospitals and other healthcare providers. The organisation that collects your data is called NHS Digital.
To help improve services, NHS Digital shares this data with researchers from organisations such as universities or hospitals.
All data that is collected and shared is protected by strict rules around privacy, confidentiality and security.
Opting out of data sharing
Your right to opt out
You can choose not to have anything that could identify you shared beyond your GP practice (Type 1 objection). You can also choose for the NHSD not to share information it collects from all health providers any further (previously known as Type 2 objection, now National Data Opt-out).
If you have previously told your GP practice that you don’t want the NHSD to share your personal confidential information for purposes other than your own care and treatment, your opt-out will have been implemented by the NHSD from July 31 2022. It will remain in place unless you change it.
You can find more information about how the HSCIC handles your information and choices and how it manages your opt-out on the HSCIC website www.hscic.gov.uk/yourinfo
Type 1 Opt-out
This stops your GP surgery from sharing your data with third parties for purposes other than direct medical care. To opt out of Type 1 you will need to complete a form and return it to your GP Surgery for processing.
Type 1 opt out form
National Data Opt-out
This stops NHS Digital and other health and care organisations from sharing your data for research and planning. This can be done by clicking the link to National Data Opt-out.
Q & A’s
What data is collected?
Data collected can include diagnoses, operations recorded, allergies and medications used including its effects. Data collected has personal identifiers removed in all circumstances to maintain confidentiality.
Where does my information go?
The data collected may be shared with NHS planning services, patient monitoring and safety departments, commissioners, university researchers, charities and some companies partnered with the NHS for delivery of medication or services. The collection and analysis of data has proved vital during the pandemic, and will continue to do so.
Are there any drawbacks of opting-out?
If you opt-out your direct care will not be affected. If large numbers of people do opt-out of allowing their information to be used for research however, this could affect the quality and validity of the data on which the research depends. This can potentially impact improvement of services and lifesaving treatment.
Opting-out at a glance
