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How to opt out of the new NHS data-sharing scheme, how the system works, and why it has been delayed

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The medical records of NHS patients in England are set to be gathered in a centralised database, under a controversial new scheme.

Officially known as General Practice Data for Planning and Research, the scheme had been due to start on 1 July, but has been delayed by two months until 1 September, due to privacy concerns.

Here is everything you need to know about it, and how to opt out.

What is the data-sharing scheme?

The plan will see all patient data about physical, mental and sexual health from GP surgeries compiled into one centralised database.

Identifying details, such as people’s names, addresses and NHS numbers will not be stored. Nor will data about IVF treatment and certain information about gender re-assignment, which cannot be shared by law.

But information on diagnoses, symptoms, test results, medications, allergies, immunisations and referrals will all be collected, as well as data on sex, ethnicity and sexual orientation.

Details on which patients staff have treated will also be stored.

The data collected will be from the last 10 years, and constantly updated.

Why is it controversial?

NHS Digital, which is controlling the scheme, says the data will be used for a “wide variety of research and analysis to help run and improve health and care services”.

It says it will help the NHS assess things like the long-term impacts of Covid-19, health inequalities and aid with research for serious illnesses.

However, there are concerns over storing so much data in one central location, due to the possibility of breaches, and the face that private organisations will be able to access the data – though only for necessary purposes, and it cannot be used commercially.

The General Practice Data for Planning and Research differs from the current system in that it constantly updates the database, whereas at present data is only shared when requests are made, and GP surgeries can opt out.

How can I opt out?

You can opt out of the scheme by heading here.

The deadline for opting out was due to be 23 June, but has now been pushed back to 25 August.


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