Updated The UK’s influential doctors’ union reckons NHS Digital’s current communication of its controversial plan to extract patients’ medical histories from GP systems is going so well the government agency’s own enforcer of patient confidentiality could step in and halt the programme.
Speaking to The Register, Dr Farah Jameel, BMA GP committee executive team IT lead, said UK data protection law’s requirement for transparency in uses – and change in use – of people’s data calls into question whether the General Practice Data for Planning and Research (GPDPR) should go ahead, given the current state of public interaction.
NHS Digital announced GPDPR in May, saying it planned to place historic data from the nation's general practitioners (GPs) on 55 million people in England into a central repository from 1 July, for the purpose of NHS planning and medical research. The public was told to opt out of the programme by 23 June.
Although patients had the right to opt out of the programme, only by doing so before the initial extraction could they prevent historical medical data, including conditions, drugs taken, sexual diseases, child and relationship abuse, from being uploaded to the central store and shared with third parties, including private companies outside the NHS.
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The plan was met by an outcry from personal privacy campaigners, while the BMA and the Royal College of GPs successfully campaigned for the extraction date to be put back (it is now 1 September) to allow more time to explain to patients about their rights to opt out. However, although it has given the 1 September date for when it will inhale the data set, NHS Digital has not said until which date patients may opt out.
Communication is key
UK data regulator the ICO says that fairness and transparency are fundamental to the UK’s interpretation of the General Data Protection Regulation, implemented in the Data Protection Act 2018.
Communication of what has been dubbed the biggest data grab in NHS history has amounted to social media posts, an NHS Digital website and a downloadable poster for GP surgeries, potentially leaving huge swathes of the population unaware that use of their data held by GPs was going to change.
Dr Jameel told The Reg that the current level of communication might not meet the requirement for transparency under UK law.
“We have put to NHS Digital that they need to ensure that transparency has been met, and I think at this juncture the social media and the press coverage suggest that transparency has not been met.
"[NHS Digital] will have their own internal test for compliance, which to me suggests that is a problem for NHS Digital to go away and look at before they progress with the programme. So it might come to a juncture where, if transparency continues not to be met, that could mean their Caldicott Guardian says, ‘Sorry but I cannot allow the rest of this programme’," she said.
A Caldicott Guardian is a senior individual in a health organisation who is responsible for ensuring the confidentiality of medical and health data, under a system dating back to the 1990s named after Dame Fiona Caldicott.
Pressed on whether the BMA, which provides legal advice to doctors, could suggest GPs should prevent the upload of patient data to the central store, Dr Jamel said the union would watch how NHS Digital responded to its calls for better communication and “provide the right advice when the time comes.”
She said that GPs were under legal direction from the Secretary of State, and “it's a contractual responsibility, we must comply with: that's how this whole programme has been designed.”
First do no harm
But she added that GPs had a professional obligation to “do no harm” to patients.
“My job is to safeguard and be the advocate of my patients, that trumps anything and everything and all clinicians will remember that, and hence the anxiety and concern that's been expressed publicly in the media by numerous doctors,” she said.
Once data is uploaded into the system there is planned oversight of how it might be shared with third parties including other NHS organisations, universities and private companies.
Opting out of NHS Digital data grab
Despite the delay, 55 million citizens of England will need to opt out of the involuntary General Practice Data for Planning and Research scheme before it is introduced to prevent the entire history of their GP visits being slurped, according to campaigners.
The official announcement is here. Opt-out forms are here [.docx]. We understand you will need to give this form to your GP practice to prevent data held by your GP from joining the central repository, which will now happen on 1 September.
There is also a secondary opt-out process that stops non-GP data, such as hospital or clinic treatments, being used or sold for purposes other than your direct care. Healthcare data privacy campaigner medConfidential explains both Type 1 and Type 2 opt-outs here.
This is governed by NHS Digital’s Data Access Request Service, an Independent Group Advising on the Release of Data (IGARD), which sits within NHS Digital but is made up of researchers and medical practitioners. A Professional Advisory Group from the BMA and the RCGP also have oversight of the release of data. That group would scrutinise individual request for data when re-identification of individuals was required, she said.
The Professional Advisory Group already approves the release of hospital data, and Dr Jameel said the BMA was happy with the way that this operated at the moment, but was concerned the process could change at some point after the GP data had been handed over.
“The landscape that we're in at the moment and the era that we're entering is unknown. I don't know what the future will hold… if the government will determine that [health secretary] Matt Hancock will be given powers to command data around the system. Once the data leaves our practice, and it arrives at NHS Digital, we’re fairly confident that what will happen within NHS Digital will be fairly safe. The anxieties are about how future programs might interact,” she said.
NHS Digital has been given the opportunity to comment.
In a statement issued earlier this month, the ICO said: “We recognise the concerns people have with the GP Data for Planning and Research programme and, while we have already engaged with NHS Digital regarding their data protection obligations, we continue to work with them and others about next steps.”
The UK's data regulator declined to offer further comment at this stage. ®
Updated to add at 14:41 UTC on 25/06/21:
An NHS Digital spokesperson told The Register: "Data saves lives and has huge potential to rapidly improve care and outcomes, as the response to the COVID-19 pandemic has shown. The vaccine rollout could not have been delivered without effective use of data to ensure it reached the whole population.
"We are absolutely determined to take people with us on this mission. We take our responsibility to safeguard the data we hold incredibly seriously.
"We intend to use the next two months to speak with patients, doctors, health charities and others to strengthen the plan even further."