Your Data Matters to the NHS
Information about your health and care helps the NHS to improve your individual care, speed up diagnosis, plan your local services and research new treatments.
In May 2018, the strict rules about how this data can and cannot be used were strengthened. The NHS is committed to keeping patient information safe and always being clear about how it is used.
The NHS, local authorities, university and hospital researchers, medical colleges and pharmaceutical companies researching new treatments can use your confidential patient information for research and planning. You can choose whether your confidential patient information is used for research and planning.
The national data opt-out is a new service that allows people to opt out of their confidential patient information being used for research and planning. The NHS wants to make sure you and your family have the best care now and in the future. Your health and adult social care information supports your individual care. It also helps us to research, plan and improve health and care services in England.
There are very strict rules on how this data can and cannot be used, and you have clear data rights. We are committed to keeping patient information safe and will always be clear on how it is used.
You can choose whether or not your confidential patient information is used for research and planning.
You have a choice
If you don’t want your confidential patient information to be used for research and planning, you can opt out of this. If you do opt out, there are some specific situations where your data may still be used. Data that does not identify you may still also be used.
Your confidential patient information will still be used to support your individual care. Any preference you set using this service will not change this.
If you opt out, your decision will only apply within the health and care system in England. Your opt-out will not apply to your health data where you have accessed health or care services outside of England, such as in Scotland and Wales.
You can find out more on the NHS England https://digital.nhs.uk/national-data-opt-out or call 0300 303 5678
and/or view the NHS Digital patient Leaflet
Key Information Summary – Important things to remember are:
- your data can be used to help research and planning
- you don’t have to do anything if you are happy for this to continue
- your decision will not affect your own individual care in any way
- you can change your mind any time in the future
Opt Out Online – You must have an email address or phone number registered with an NHS service to continue online. To continue you will need:
- to be aged 13 or over
- access to your email or mobile phone
- your NHS number
- follow the link to https://digital.nhs.uk/national-data-opt-out and select ‘manage your choices’ and follow the instructions.
Opt Out by Phone – Contact the NHS Digital Contact Centre to verify your identity and discuss your data sharing choices. We may be able to guide you through the service or set a choice on your behalf. Call: 0300 303 5678 Open: 9am to 5pm Monday to Friday (excluding bank holidays)
Opt Out by Post – https://assets.nhs.uk/prod/documents/Non-Digital_Opt-Out_Form_V14.pdf
Opt Out for Someone Else – You can also set a choice on behalf of another individual by proxy. For example, a parent may want to set a choice on behalf of their child. https://assets.nhs.uk/prod/documents/Non-Digital_Proxy_Opt-Out_Form_V16.pdf
Watch a British Sign Language video of the Your Data Matters to the NHS patient handout.
Listen to an audio version of the Your Data Matters to the NHS patient handout.
Order a braille version of the Your Data Matters to the NHS patient handout.