'An example of an NHS IT project that's gone well'
The recommendation for a steady-as-she-goes approach has been broadly welcomed by cancer charities, which are concerned about the impact a quick restructuring could have on the information, which is one of the richest disease databases and widely regarded as an invaluable resource.
"It's an example of an NHS IT project that's gone well," Michael Chapman, director of information and involvement at Cancer Research UK, told The Register.
"It has lots of automated matching and linking of information, but its real value is the fact it's a comprehensive set of information from multiple sources that's curated by expert cancer registry officers."
Because of this inbuilt knowledge among staff and the importance of the links between the data, Chapman said it was crucial that all of the registry's functions – regulatory, analytical and more – be transferred in their entirety, in one go.
He said that, when the data set was first consolidated into PHE, staff who collected data were separated from those who analysed it – a decision that "looked broadly sensible" but had unintended consequences that caused "huge disruption" to wider NHS cancer services and research.
"The overall effect was a real slowdown in the improvements we'd been seeing in data quality and in the analytical outputs driving cancer strategies and cancer services, and a real slowdown in outputs of data to researchers," Chapman said.
If that was the effect of separating functions within an organisation, ending up with them split up across two organisations would be "highly disruptive", he said.
Chapman added that it was important that, should the data set move to NHS Digital, its resourcing didn't end up being squeezed if the health service came under future budget pressures. But he said that, overall, the approach recommended by McNeill was "pragmatic".
However, MedConfidential coordinator Phil Booth said that the review should have gone further, and criticised it for not having taken into account past problems.
"This review contains no opportunities for a better use of cancer patients' data," he said, adding that it "could have been written at any point it the last decade, and reflects none of the improvements that have been promises since Care.data collapsed".
This includes patients' rights to know how their data is being used – a complex picture that is made more so by the fact data is held in so many places.
Moving data to NHS Digital might simplify this, but in the meantime PHE still has a responsibility to improve the way it gives patients the necessary information.
For instance, hospitals are required to tell cancer patients their info will be added to the registry, but Chapman said that only around one in four diagnosed with cancer knew about it.
That doesn't mean all hospitals failed to explain the database – it's likely that some patients won't be paying much attention to all the leaflets they're handed on receiving such news.
But either way, the system needs to be improved, and the onus is on PHE to push hospitals to come up with a better way to make sure people know what is happening to their data.
The recommendations of the Caldicott review, published last summer, is one way the health service is aiming to streamline this approach and have been accepted by the government.
It includes a simpler consent and opt-out model with greater clarity for patients, which will be phased in, with all patients who have already registered a type one opt-out (which objects to identifiable data being shared outside of their GP) honoured until 2020. ®