The British Medical Association and Royal College of GPs today told NHS Digital they do not endorse the UK government's imminent haul of English GP data – dubbed "the biggest data grab in the history" of the service.
The BMA, the powerful UK doctors' union, has separately called for a delay to the programme until the public is properly informed.
In their joint letter to NHS Digital - a non-departmental public body commissioned by the Department of Health - the professional groups for family doctors criticised the organisation for a "lack of communication with the public regarding the general practice data for planning and research (GPDPR) programme."
The joint letter signed by professor Martin Marshall, Royal College of General Practitioners, and Dr Richard Vautrey, chair of the BMA’s powerful General Practitioners Committee ratcheted up pressure on NHS Digital as a legal challenge to the data grab is being prepared by campaign groups.
“The RCGP and BMA have supported communications to practices in recognition of the legal requirement to comply with the new collection, but neither organisation has endorsed the programme,” the letter said.
Launched in mid-May, General Practice Data for Planning and Research (GPDPR) data collection is set to replace the General Practice Extraction Service (GPES) in England, which has operated for over 10 years. Patients were given only six weeks to opt out of sharing their GP-held medical data with a central NHS Digital system with a deadline of 23 June.
The move represents “a shift in terms of the scale and centralisation of the data held and is widely perceived to be a meaningful change,” the BMA and RCGP said.
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“The current situation, whereby communications have been limited to NHS Digital's online platforms and by extension only those who are digitally literate, is not sufficiently informing patients of the collection.
"Providing information for GP practices to share in waiting rooms after the programme had already launched, is an ineffective addition, especially given continued social distancing restrictions which limits the numbers of patients attending their GP practice in person or spending time in waiting rooms,” the letter said.
Separately, the BMA issued a statement calling on NHS Digital and the government to delay the introduction of its new data programme until patients and the public have had time to be aware of and understand the programme and choose to opt out if they wish.
"The timeline is far too short because NHS Digital has not transparently and actively engaged the public in increasing awareness of the GPDPR programme since its announcement in early May."
BMA GP committee executive team member and IT lead Dr Farah Jameel said: “Everyone deserves to know what happens to their healthcare data, and throughout our discussions with NHS Digital about this programme, we have stressed the importance of clear communication with the public.
“However, recent weeks have shown that communication from NHS Digital to the public has been completely inadequate, causing confusion for patients and GPs alike," she said.
At the launch of the programme NHS Digital was at pains to say that for over three years it had “engaged with the BMA, the Royal College of GPs and the National Data Guardian to ensure relevant safeguards are in place for patients and GP practices”, but a source familiar with the process told The Register the professional bodies did not necessarily agree those safeguards were in place.
“The engagement exercise was trying to bring the profession along with the process and have its buy-in. The last few months have been a breakneck, headlong rush to get the data… and it feels like a different process entirely from the one that profession was involved in before,” our source said.
“[NHS Digital] have worked with GP leaders to ensure the safeguards are in place. What they have put on their website is factually correct, [but] the profession does not agree that the safeguards are in place, and therefore they have not been endorsed,” they said.
The RCPG and BMA letter comes as technology campaign group nonprofit Foxglove prepares a legal challenge to the data haul.
Also backed by Just Treatment, Doctors’ Association UK, the Citizens, openDemocracy and the National Pensioners Convention, as well as MP David Davis, the challenge warns the extraction of GP data into systems controlled by NHS Digital is unlawful and the group will seek an injunction to halt the scheme.
In pre-action letters addressed to NHS Digital and the Department of Health and Social Care, the groups said:
It is envisaged that [GPs’ patient] data will be taken daily for all patients in scope and may be used and re-used for multiple purposes not simply by the NHS and other public health authorities, but by an array of other bodies in the public health ‘field’.
This includes commercial entities. The mass scale data collection process inherent in the new service is unprecedented and of serious concern.
They added: “Of particular concern is the fact that the deadline for ‘opting out’ of this mass scale selection process is 23 June 2021, with the first collection set to occur on 1 July 2021. In practice, this gives patients less than 6 weeks to discover the existence of the new GPDPR service, understand how it works and its implications, discern how to opt out effectively.
“If they do not, the new service will collect data from 1 July 2021 and thereafter individuals will only have the right to opt out prospectively. If the opt-out is exercised in the short time available, GP practices have a single week to implement the opt-out – despite GP practices operating under a period of high strain on their resources,” a letter from Foxglove’s lawyers said.
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."
In agreement, Dr Bill Mitchell, director of policy at BCS, said ethical use of health data can benefit the whole of society but it's "hard to know precisely who is doing what with this data and the process should be far easier to understand and more visible to the general public."
He said the millions of people in England affected will be "unaware" of the data grab. “When new terms and conditions are introduced by messenger apps, at least they pop up on our phones and gives us a chance to review them, even if they are legally complex. Nothing as direct has happened here in terms of advertising and campaigning.
“To really gain public trust and demonstrate commitment to ethical and professional data use, organisations need to wholeheartedly embrace openness and transparency, which is especially true for the NHS. There must be a robust mechanism for us to check what’s actually going on with our data and to be told very clearly whenever there are significant changes to how our data is shared, if that might give us pause for thought.”
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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.
“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.” ®