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National Data Opt-Out

by Sarah Turner | Feb 17, 2020

Your health records contain a type of data called confidential patient information. This data can be used to help with research and planning. You can choose to stop your confidential patient information being used for research and planning. You can also make a choice for someone else like your children under the age of 13. Your choice will only apply to the health and care system in England. This does not apply to health or care services accessed in Scotland, Wales or Northern Ireland. NHS data screenshot

What is the Opt–Out?

The National Opt–Out was introduced in May 2018 by the NHS. It gives everyone the chance to exercise their right to choose how their data is used for any purpose outside the process of actual treatment. This means it applies to use of your data for “secondary purpose”, usually related to research or planning. The Opt-Out gives effect to the right set out in the NHS Constitution to “request that your confidential information is not used beyond your own care and treatment”. 

What can I choose?

The National Data Opt-Out allows people to opt out of their confidential patient information being used for research and planning purposes. 

The NHS defines confidential patient data as information which identifies you and says something about your health, care or treatment. Information that only identifies you, such as your name and address is not confidential patient information and may still be used. As an example, sending an NHS questionnaire out to a random sample of the public would need to use names and addresses, but would NOT be seen as a use of confidential patient information.

However, sending a questionnaire out to patients with a previous diagnosis of a particular condition would be seen as using confidential patient information as it would only go to people who were known to have had that diagnosis.

Where can I find out more information?

More information about this scheme and how to exercise your rights can be found at:

The Trust’s placed notices at all our services to alert patients to the Opt–Out option for the use of their data for secondary care. . 

Are there areas where the National Data Opt-Out doesn’t apply?

There is a full list of circumstances where the National Data Opt-Out currently does not apply and where your confidential patient information will still be used. Opting out will not apply:

• where the information is used for purposes relating to your individual care
• where the confidential patient information does not contain your NHS number
• if obtaining the number would involve disproportionate effort
• if you have given consent for your data to be used for a specific reason, such as a medical research study
• where data is anonymised which means you cannot be identified from the information
• to national patient experience surveys sent out before April 2019
• to data shared with Public Health England for the National Cancer Registration Service and National Congenital Anomalies and Rare Diseases Registration Service.

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