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Campaigners threaten legal action over ‘sneaky’ NHS data sharing plans


Campaigners have threatened legal action over plans to share GP data (Credits: Morsa Images/ Getty Images/Abel Mitj Varela)

Activists have threatened to sue the government over controversial plans to share GP data with third parties.

In a letter sent Thursday, privacy campaigners accused Matt Hancock of rushing through the ‘unlawful’ plans without giving patients a proper chance to opt out.

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

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

Researchers and other third parties, including companies, will be able to request the data from NHS Digital for a fee.

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.

Medical research and planning

NHS Digital says the data will be used to improve medical research, health policy and local health and care services. It cannot be shared with marketing or insurance companies.

The move essentially expands the data available through NHS Digital. Hospital data, for example, is already shared with the body unless a patient opts out.

Specific GP data is already collected and shared with organisations through the decade-old ‘General Practice Extraction Service’.

Some GPs also share information through databases like the Medicines and Healthcare products Regulatory Agency-funded Clinical Practice Research Datalink and the private-sector Health Improvement Database.

Emergency Covid-19 rules also required GPs to temporarily share confidential patient data related to the outbreak.

NHS Digital says the new system will simplify existing data-sharing methods and ease pressures on existing GP systems.

A spokesperson told Metro.co.uk that NHS Digital already follows up with companies to make sure they are storing and using NHS data appropriately.

Announced ‘on a single website’

Justice campaign group Foxglove says the government has ‘rushed’ through the mass data scrape without giving patients proper opportunity to opt out.

The organisation says Hancock announced the plans to the public through leaflets at GP surgeries and ‘on a single website’.

Alongside other campaign groups like openDemocracy and MP David Davis, Foxglove have threatened to sue the Department of Health and Social Care unless it delays the data grab and runs a ‘proper’ public consultation.

Foxglove Director Cori Crider said: ‘Look, if everyone from senior citizens to GPs to Tory MPs are prepared to sue over this process, something’s terribly wrong. Trust is everything in the NHS, and the way the government has rolled this scheme out has eroded patient trust.

‘We’re having to go to court urgently because of the government’s decision to bounce us all — giving everyone just six weeks to decide what we want done with our health data. We hope the government will see sense but if not, we’re ready to fight for patients’ right to decide — and to defend the relationship of trust between patients and their family GP.’

But NHS Digital defended the new arrangement, saying it would build on the ‘life-saving’ data-sharing efforts already in place.

An NHS Digital spokesperson said: ‘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. 

‘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.’ 

MedConfidential coordinator Phil Booth told Metro.co.uk: ‘Last week it was Covid-19 research — though they’ve been taking that data for a year already — this week it is MMR and autism.

‘No-one disputes that legitimate research can do good. But grabbing everyone’s GP histories while we’re in a pandemic is not only unlawful, it’s unethical. And the sneaky way it’s being taken will pollute any research anyone ever tries doing with it.’

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 before 23rd June.

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.

If you miss the June deadline, you can ask your GP to stop sharing your data with NHS Digital. But any data they’ve already shared will be kept on file.

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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