Exclusive NHS England spent nearly £8m on its controversial care.data programme before scrapping it earlier this year, El Reg can reveal.
The publicly hated programme was beset by delays and was criticised by both doctors and privacy campaigners about the haphazard way it would share sensitive medical data of citizens with commercial companies without explicit consent.
According to a Freedom of Information request, NHS England spent £2.16m in 2015, and nearly half a million pounds between January and June this year. That goes on top of the £5m that El Reg had already revealed had been spent on the programme up until June last year, bringing the grand total spent on care.data to £7.7m.
NHS England said that it had spent money on “important” items. This included a leaflet drop, which was an awareness-increasing idea that actually cost more than £1m and was criticised for not reaching all households in the UK and for having minimal impact on raising awareness of care.data. Other “important” items NHS England alluded to include a patient information and GP helpline, and research into public attitudes of the sharing of data which helped inform Dame Fiona Caldicott’s recent report into data governance in light of the failure of care.data.
In its response to El Reg, NHS England emphasised that: “The money invested in the care.data programme ha[s] not been wasted.
“The work the programme has developed has been invaluable and will support the new programmes the National Information Board (NIB) will take forward. For example, the programme has been developing and testing ways to explain, in real terms, the benefits sharing health and care data can bring. This will play a crucial role in gaining the support of the public for information sharing,” it added.
NHS England also said that the foundations the care.data programme has established as part of the pathfinder stage will also aid the implementation of a new consent model.
The £7.7m total is unlikely to be the actual amount spent on the programme. NHS England makes clear in its response to El Reg that its spend data is only from April 2013 (when NHS England was formerly established) to June 2016.
That means that a certain amount would have been spent prior to that date. It also states that while the majority of funding for care.data came from NHS England, additional costs were incurred by NHS Digital, formerly known as the Health and Social Care Information Centre (HSCIC), and these costs are not held by NHS England.
Neha Ralhan, analyst at Kable, suggested that prior to April 2013, there could have been a lump sum given to jump start the programme, and speculated that the Department of Health could also have put funding into the project, which hasn’t been accounted for.
Either way, a big question after scrapping a programme that cost the taxpayer millions is whether £8m-worth of resources can be reused for the next NHS data-sharing project or indeed other local projects.
James Hawkins, director of programmes at NHS Digital, told El Reg at Capita’s Channel Shift conference, that many new local initiatives could use “some of the national components” available - although he didn’t refer specifically to care.data.
Meanwhile, Alex Yeates, medical director at health software specialist Advanced said he believes care.data could have set a foundation for other projects and its resources won’t go unused.
“I don’t think it’s been wasted money, although it could have been better spent – it has at least raised awareness,” he said.
And even the money that could quite easily be seen as a waste – such as the care.data leaflets – could at least ensure that the NHS doesn’t make the same kind of mistake again.
“A lot of the money perhaps won’t be reused but could be put down to ‘lessons learnt’,” said Ralhan.
Ralhan added that it is hard to determine how much of the overall sum would be able to be used again, particularly as there is little information about the next NHS data-sharing project.
“What we can safely estimate is that additional funds will be added on to this, particularly as opt-outs will need to be put into place,” she said.
Opt-outs are the key to getting the next NHS programme’s approval from doctors, privacy campaigners and patients. Its latest consultation has finished, and NHS Digital’s Hawkins said that the government is now looking at the responses and trying to ensure there is a clear way for data to be used for care, and secondary uses, which he said “included research and other aspects of care or managing care”.
Many within the health industry believe the NHS is likely to reboot the project with a different name, in the hope that the negative connotations of care.data are left behind. NHS England could learn a lot from Camden Clinical Commission Group (CCG), which has cleared up how the “opt-out” should work before aiming to integrate digital health records.
Hasib Aftab, head of IT and systems at the CCG, explained that this meant getting lawyers involved, giving providers and suppliers responsibility of putting opt-outs into the systems, and raising patient awareness through road shows, events and leaflets. ®