Doctors have warned that plans to pool medical records on to a database and share them with third parties could erode the relationship between them and patients.

The warning came as the Royal College of GPs wrote to NHS Digital urging it to better communicate with the public about the plans and their options for opting out.

Critics have voiced concerns over the NHS Digital plans, which would put the medical histories of more than 55 million patients into a database available to academic and commercial third parties for research and planning purposes.

Privacy campaigners have already spoken out against the proposals, which include sharing anonymised mental and sexual health data, criminal records, and more sensitive information. The records would be scraped from every patient in England registered to a GP clinic by NHS Digital, which runs the country’s healthcare IT systems.

The Doctors’ Association UK (DAUK), a campaigning and lobbying organisation comprised of doctors, said it was concerned this would “erode the doctor/patient relationship, leaving patients reluctant to share their problems due to fears of where their data will be shared”.

Dr Ellen Welch, a GP and the editorial leader of DAUK, said: “NHS Digital has failed to publicise this adequately to patients or healthcare staff, and we feel more time is needed to explain to patients how exactly their data will be used, who will benefit from it and what implications it may have for individuals.”

Prof Martin Marshall, the chair of the Royal College of General Practitioners (RCGP), said it supported the principle of improved sharing of data for important healthcare planning and research, but it was “critical that this is transparent and that patients have confidence and trust in how the NHS and other bodies might use their information”.

He said the RCGP and the British Medical Association were engaged with the planning of the new data collection, adding it would continue to lobby “NHS Digital to ensure appropriate safeguards are in place for how the data collected is used”.

Marshall said: “The job of informing the public must not be left to busy GPs, especially at a time of extreme workload pressures and focus on the Covid-19 vaccination programme, so we have written to NHS Digital urging them to undertake greater communications with the public about this new collection and their options for opting out.” 

The health secretary, Matt Hancock, first announced the plan in April via blog posts on the NHS Digital website and flyers at GP surgeries.

However, the advocacy group MedConfidential told the Financial Times: ‘They’re trying to sneak it out, they are giving you six weeks nominally and if you do not act based on webpages on the NHS Digital site and some YouTube videos and a few tweets, your entire GP history could have been scraped, never to be deleted.”

The data will be anonymised and given “codes” that can be used to reveal the identity of the data’s owners if there is a “valid legal reason”. Privacy campaigners have said the plans are “legally problematic” and patients have been given a limited window to opt out. The deadline for opting out is 23 June and can be done by patients completing a form and giving it to their family doctor. 

The digital rights campaign group Foxglove has written to the Department of Health and Social Care. “Very few members of the public will be aware that the new processing is imminent, directly affecting their personal medical data,” their solicitor, Rosa Curling, said in the letter.

A spokesperson for the British Medical Association said it was engaged in the planning for the collection and “made representations on behalf of GP practices” to “ensure stronger arrangements were put in place over the security and intended uses of the data collected, and to minimise administrative burden for practices”.

“We will continue to hold NHS Digital to account,” they said.

The UK’s data regulator is reportedly producing a data protection impact assessment about the plans.

An NHS Digital spokesperson said: “Patient data is already used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives.

“During the pandemic, data from GPs has been used to benefit millions of us: helping to identify and protect those most vulnerable, roll out our world-leading vaccine programme, and identify hospital treatments which have prevented people dying from Covid.

“We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data. The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it.”

They added: “We are exploring further options to expand our communications approach and remain committed to being transparent with patients and the public about the collection and use of data.”

Plans for the largest seizure of GP data in NHS history are unlawful and the government faces an urgent legal challenge unless the scheme is stopped and changed, says a pre-action letter sent today on behalf of five organisations and a Conservative MP. 

Tech-justice nonprofit Foxglove are supporting this group – Just Treatment, Doctors’ Association UK, the Citizens, openDemocracy and the National Pensioners Convention, as well as David Davis MP – to take the scheme to court. 

The coalition’s legal letter, sent today to the Department of Health and Social Care and NHS Digital, warns that unless the government pauses the grab of confidential patient data from GPs and seeks meaningful patient consent, the group will seek an injunction to halt the scheme. 

The urgent move follows a decision by DHSC and NHS Digital to seize the entire GP record of all 55 million patients in England. 

A deadline of just six weeks, by 23 June, has been set for patients to learn about the scheme and opt-out if they want by submitting a form to their GP. If a patient fails to opt out by the deadline their health record goes into the central store on 1 July and will not be deleted. 

The coalition bringing this case say that rushing this major change through with no transparency or debate violates patient trust, and that doing so without patient consent is unlawful. 

The government admits companies will be allowed to access the data – without being clear which companies, for what purposes, or what safeguards apply. The health data being collected is not anonymous; it is pseudonymous, so people’s records can later be re-identified. The government’s documentation admits that re-identification will be permitted in some cases. 

The pre-action letter says that this rushed process gives patients no meaningful chance to opt-out, and excludes older people and others who may not be online. It also says patient rights to opt-out only have meaning if the government is clear and transparent about which third parties will access the data – and for what purpose. Without patient consent, the letter says, the process is unfair and likely to undermine people’s trust in their GPs. For these and other legal reasons, the letter says, the scheme must be paused and a real process for informing and involving patients must be built in. 

On 12 May, the government announced the scheme, called ‘General Practice Data for Planning and Research’ (GPDPR). Using a Direction of the Health Secretary to NHS Digital, and a legal notice to all English GPs, the scheme orders GPs to hand over their full medical record on every man, woman and child in their practice. The data being taken includes sensitive issues like depression, autism, STIs, erectile dysfunction, and addiction – for planning, commissioning, and commercial research. 

The scheme is in many ways a repeat of the disastrous 2014 care.data system, in which the government last tried to collect partial GP records, but did not explain to people the terms on which companies would access the data. The new scheme is broader – it collects more sensitive records on people – and it doesn’t even send people an individual leaflet to give them a chance to opt out.

The groups are today launching a crowdfunder to cover the cost risk of the legal claim: https://www.crowdjustice.com/case/stop-the-nhs-gp-data-grab/

“GPs were barely informed of this major change – how are patients expected to know about it? DAUK supports safe, consensual uses of patient data, including for health research. But we want to see it done in a way that keeps faith with patient trust and won’t erode the relationship between clinician and doctor. Patients need to give informed consent to their data being used. We can’t see why the government won’t do this in a less rushed and more transparent way.” 

Dr Rosie Shire, a GP at Doctors’ Association UK,

“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.” 

Cori Crider, Foxglove Director,

Foxglove is a non-profit that exists to make tech fair. Their prior successful legal challenges include NHS contracts to controversial US data firm Palantir, an algorithm the Home Office used to process millions of visa applications, and the disastrous A-level algorithm. 

Patients who wish to opt out can do so with the help of medConfidential’s guide here: https://medconfidential.org/how-to-opt-out/

The coalition’s lawyers are Rosa Curling, Foxglove Director as consulting solicitor at Scott-Moncrieff & Associates, and Robert Palmer QC and Julianne Morrison of Monckton Chambers.