NHS data sharing plans postponed after backlash from campaigners

Controversial plans for NHS Digital to share the medical records of patients with outside third parties have been postponed.

Justice campaign group Foxglove has tweeted the news, following a concerted effort by campaigners to stop the move.

From 1st July, tech body NHS Digital would have been able to scrape patient data – including mental and sexual health data and other sensitive information – from all GP practices across England.

That now looks to have been deferred to September 1.

The NHS says the new rules will update and simplify a decade-old system for requesting GP data.

But many privacy campaigners said the plans were ‘unlawful’ and don’t give patients a proper chance to opt out.

Patient names and addresses, as well as details about certain medical procedures like IVF, will not be shared.

Other identifying information, such as NHS numbers, will be ‘pseudonymised’. This means third parties shouldn’t be able to tell who any patient data refers to.

But the NHS will retain ‘codes’ to unlock the data if there is a ‘valid legal reason’ to do so.

‘Understanding patient data saves lives. Sharing GP data has been integral in identifying medical evidence and treatment, including there being no association between the MMR vaccine and the development of autism, confirming the safety of vaccines, and investigating links between medications and cancer risk,’ an NHS spokesperson said last week. 

‘The new programme for collecting data has been developed in collaboration with doctors, patients and data, privacy and ethics experts to build on and improve systems for data collection.’

How to opt-out

Patients can opt-out of the data-scrape by sending a completed ‘Type 1’ opt-out form to their GP practice.

This letter — which prevents GPs from sharing data that isn’t directly related to your individual care — has been available since 2013.

You can download the form on the NHS Digital website and send it by post or email. You can also call 0300 3035678 to ask for a copy to be sent to your home.

Patients can also opt out of sharing information held by NHS Digital at any time online through the National Data Opt-Out. This won’t stop the body from collecting information from your GP, but it will prevent it leaving the organisation.

If you aren’t sure whether you’ve opted out or not, you can check on the NHS website.


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