Plans to launch a pilot of the UK’s troubled patient data collection scheme later this year look set to be more limited than originally thought.
NHS England wrote to Clinical Commissioning Groups (CCGs) in April outlining a proposal for a phased roll out of the GP data extraction process involving between 100 and 500 GP practices.
But the Health and Social Care Information Centre (HSCIC) – which will support the programme and provide its technology framework – now says the numbers involved will be at the lowest end of that scale.
Speaking at OPEN Health’s Big Ideas event in London earlier this week, HSCIC chair Kingsley Manning said: “We will do a trial run of collecting data from 100 GP practices in the autumn, the technology is in place to do that and we’re confident of being able to do the interaction and the collection.
“On the basis of that trial run a decision will be made about [whether or not] to roll it out across the country as a whole at the end of this year or the beginning of next.”
Even the project’s “most enthusiastic critics actually believe it’s a good thing to do, they just don’t like the way it’s being done”, he added.
But, with some understatement, Manning acknowledged “it did spark, it has sparked and continues to spark a really quite excited response”.
The response saw Care.Data put on hold for six months after it attracted a barrage of criticism from medical and patient groups who argued that it was being rolled out too quickly.
“To some extent, it seems to me, that that response reflects as much as anything else a fundamental change in public attitudes and one that we have to be very, very conscious of,” said Manning. “It’s pretty obvious that part of the problem is that there’s a general loss of trust in public institutions.”
He added: “The last 12 months have been a pretty painful time. We need to recognise much of the criticism is valid; we have to be more transparent. Citizens have rights that are irritating and awkward, but that we have to honour.”
Nevertheless, Manning was bullish about the huge potential he sees in better use of healthcare information.
“The power of data, the power of technology to transform in a radical and fundamental fashion the way in which individuals live their lives, and how they manage their health, is potentially the best hope we have for sustaining the healthcare system.
“But it also offers a fundamental opportunity for higher quality of life, higher quality of existence.”
“Care.Data offers a depth, a richness of data that is unparalleled in almost any industrialised economy,” he said
The public’s trust, Manning said, was now a “transactional contract” and said there had to be a recognition of the need to “renegotiate the [data] contract with individuals”.
“We have to accept that the age of deference has gone and we have to develop trust in other ways – it’s about transparency and is clear that if you give people something of value they will agree [to their data being used],” he said.
