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.
