A doctor-led campaign group and a Conservative MP have joined calls to pause the proposed General Practice Data for Planning and Research (GPDPR) service and have threatened legal action.
NHS Digital announced in May 2021 that the new service would come into effect on 1 July 2021, with citizens given until 23 June to choose to opt out.
The service aims to give planners and researchers faster access to pseudonymised patient information from GPs.
Concerns that not enough time has been given to let people know about the service and that patient trust could be destroyed have been raised. Now, Just Treatment, Doctors’ Association UK, the Citizens, openDemocracy and the National Pensioners Convention, as well as Conservative MP David Davis, have called on the government to postpone the planned July launch date.
Foxglove – a team of lawyers, technology experts and community activists – have sent a pre-action letter on behalf of the organisations and Davis. The letter, which was sent to the Department of Health and Social Care and NHS Digital, claims unless the service is paused, the group will seek an injunction to halt it.
The group believes the change has been rushed through, with the pre-action letter stating it means patients do not have a meaningful chance to opt-out and that it risks excluding those who may not be online.
Dr Rosie Shire, a GP at Doctors’ Association UK [DAUK], said: “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.”
NHS Digital said it could not comment on any potential legal proceedings.
A spokesperson added: “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.
“We expect GPs to be ready to implement this new system from 1 July, which will provide benefits to patients across England and are ensuring support is in place to enable them to do this.”
Digital Health has contacted the Department of Health and Social Care for a comment.
The threat of legal action follows similar concerns from BCS, the Chartered Institute for IT and public service union, UNISON.
Dr Philip Scott, chair of the Health and Care Executive at BCS, The Chartered Institute for IT said: “NHS Digital don’t seem to have learned the lessons of the care.data fiasco.
“This is well intentioned and has great opportunities to progress research, but the total lack of engagement to build the necessary public and professional trust is astonishing.”
While Allison Roche, the UNISON policy officer who is leading on the data issue, said that the fast pace of the data rollout in the NHS was “unprecedented”.
“UNISON is campaigning for guarantees that our health data will be used in an ethical manner, assigned its true value and used for the benefit of UK healthcare,” she added.
“So far, the government has failed to deliver public transparency and trust, and little if any consultation on what they are doing with data and artificial intelligence in the health sector. We must hold them to account, now and in the future.
“The government should take steps to protect and harness the value of our health data to ensure that the public can be satisfied that its value will be safeguarded and, where appropriate, ring-fenced and reinvested in the UK’s health and care system.”
5 June 2021 @ 11:06
If people have come here looking for a guide to opting out from GPDPR you can find one at https://www.digitalhealthcoachuk.net/gpdproptoutexplained
Whose liable if a patient’s data is slurped forever, and they are inclined to sue?
5 June 2021 @ 01:17
The response of NHS Digital to protest is always the same – they ignore it, as they are doing here. I am inclined to suspect that they are going to try to grab the data and argue about it later, since once they have it, it will be irretrievable. If this is their plan, I just hope an injunction will be issued in time. And GPs should be ready. Tenir les barricades! (Ref: Eugène Delacroix, Le 28 Juillet: La Liberté guidant le peuple, musée du Louvre, Paris, 1830).