How to opt out of NHS Digital data sharing

How to opt out of NHS Digital data sharing


Plans to transfer pseudonymised medical records of 55 million British patients to central database delayed until September after concerns expressed about privacy and lack of public awareness regarding the project.

A new NHS system to collect patient information from GPs’ surgeries has been delayed in order to give the public more time to become acquainted with it.

The GP Data for Planning and Research system was due to begin the business of transferring the pseudonymised medical records of 55 million British patients to a central database controlled by the NHS on 1 July but that start date has now been pushed back to 1 September.

Announcing the delay in the House of Commons on Tuesday, health minister Jo Churchill told MPs the new system “saves lives” and stressed that the government is “absolutely determined to take people with us on this journey”.

NHS DIGITAL is looking to centralise digital records from across England into a single database, which will be shared with researchers and commercial partners.

You have until June 23, 2021 to opt-out of your NHS data being shared with researchers and companies outside of the national health service. Privacy campaigners have raised serious concerns about plans from NHS Digital, which will see the medical histories of more than 55 million patients in England imported into a new database, including mental and sexual health data, criminal records, and more sensitive information. The database will go online September 1, 2021 in England. 

The deadline applies to those who live in England and are registered with a GP clinic. NHS Digital, which runs the country’s healthcare IT systems, says a new centralised database is needed because the current system used by GP surgeries, known as General Practice Extraction, is over a decade old.

So, what’s happening with all of this patient data being collected and shared?

The information will be made available to academics and commercial third parties, privacy campaigners have claimed. The records will purportedly be used for research and planning, with NHS Digital claiming that records “decide what new health and care services are required in a local area, informs clinical guidance and policy, and supports researching and developing cures for serious illnesses, such as heart disease, diabetes, and cancer.”

NHS Digital shares a list of who it shares its data with, which is updated each month, although campaigners say it can be extremely difficult to find out who sees the data due to the NHS’ “opaque” commercial relationships. For its part, the NHS says that patient data is never used for insurance or marketing purposes, promoting or selling products or services, market research, or advertising.

Not included in the database will be patient’s full addresses, any images or videos from consultations, or legally restricted data such as IVF treatment or gender reassignment. According to the NHS, personal medical records will be anonymised to keep your identity secret.

Crucially, the code to unscramble the anonymised data will be held by the NHS and will be used to reveal the identity whenever there is “a valid legal reason”. 

To remove yourself from the database, you’ll need to fill out a form and submit it to your GP. If you don’t do this before the deadline, your medical records will become a permanent feature of the NHS Digital database. Opting out after June 23 will still work, but will only apply to future data – any historic data will still be available to researchers, academic and commercial partners of the NHS.

You can find the form required to opt out here.

Consider if you want your data passed on to third party companies and do what feels right for you.

Stay safe & take care,

Sammi xx

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