How to opt out of NHS Digital data sharing

NHS Digital outlines how patient data is used

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Concerns have been raised by privacy campaigners and GPs in recent weeks over plans to download the GP medical records of millions in England to a database under the control of NHS Digital. NHS Digital said data will only be shared to improve health and care and help respond to emergencies in the future. There are also protections in place to make sure the data is stored and used securely.

What data will NHS Digital collect?

The NHS Digital website explains they will collect “structured and coded data from patient medical records”.

However, NHS Digital add they will be able to “use the software to convert the unique codes back to data that could directly identify patients in certain circumstances, and where there is a valid legal reason”.

NHS Digital will collect details from people’s medical records, including data about their physical, mental and sexual health.

NHS Digital will also collect data about sex, ethnicity and sexual orientation of patients, as well as data about staff who have treated patients.

However, the service will not collect name and address data, except for postcode data in a “unique coded form”.

Written notes, such as details of conversations with medical staff, will not be reported, neither will images, letters and documents.

Coded data not needed due to age are not collected, such as medication information which is over 10 years old.

Some data, including fertility treatment and gender re-assignment records, cannot be shared by GPs by law.

How do you opt out of data sharing?

People have the option of registering as both a National Data Opt-out and as a Type 1 Opt-out.

The collection of data from GP practices will begin in July of this year.

So if someone does not want their data to be shared with NHS Digital they must register their Type 1 Opt-out with their GP practice by June 23, 2021.

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More information on how to opt out and where to find a form to send to GP practices can be found HERE.

The NHS Digital website explains: “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.”

With regards to the national data opt-out, people have the option of registering a national data opt-out at any time.

The NHS Digital website explains: “This will stop your health data, also known as your confidential patient information, being used for planning and research. There is no deadline.

“You can check or change your choice at https://www.nhs.uk/your-nhs-data-matters/ at any time, or by calling 03003035678.”

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