Care.data pilots to be chosen ‘shortly’

Between two and four clinical commissioning groups will be selected "in the coming weeks" to begin the pathfinder stage of the care.data programme.

The pathfinders will test different communication strategies before moving forward with the data extraction part of the project.

The care.data programme will extract data sets from different organisations, starting with GP practices, and link them to an expanded set of Hospital Episode Statistics within the 'safe haven' of the Health and Social Care Information Centre.

The project was due to start earlier this year, but was “paused” by NHS England after medical and privacy groups objected to a public leaflet campaign that failed to include a clear account of the programme, who would receive the data, or an opt-out form for patients.

Up to 500 GP practices will now trial care.data in a phased roll-out starting this autumn. EHI reported last month that CCGs were due to receive letters inviting them to take part in the pathfinder stage, but that the letters had not been sent.

Speaking at a care.data advisory group workshop last weekend, David Corbett, head of the care.data programme at the HSCIC, said this was because it had decided not to send letters, but to contact CCGs who had “expressed an informal interest” in being a pathfinder.

“Initially we were going to write to all CCGs inviting them to take part, but had some advice that people would find that to be a little bit cumbersome. Also, if we got 50 CCGs wanting to take part and can only select two, that might not work,” he said.

A selection panel that includes representatives from the royal medical colleges, HealthWatch England, and patient groups is currently considering expressions of interests from the CCGs and is hoping to make a selection in the next couple of weeks.

“[The CCGs] have to know the benefits and the resource pressures before being selected,” Corbett said, adding that if GP practices in CCG areas that are not selected want to take part, they are welcome to express their interest. “The selection doesn’t exclude other people in the country taking part, if they want to."

Ciaran Devane, chair of the care.data advisory group, said that the pathfinders will start by trialling different types of communication for both the public and healthcare professionals.

“Different types of communication will be tested in different pathfinders. What we do know is that a door drop that no one sees won’t work.

"[We also need to understand] how many people really understand what’s going on. Until we have tested it in real CCGs and real practices, no one can say. There’s no rush with this. It’s more important to do it slow and steady. We need to pay attention to what it really feels like on the ground."

He added: “It will be interesting to know if they can demonstrate benefits. Not just: ‘Can we technically do this?’ but: 'If we see primary care data next to HES data, can we see something we didn’t see before'?”

The pause on the programme was originally meant to last six months. However, Tim Kelsey, the director of patients and information at NHS England, has said repeatedly that the project is no longer “bound by artificial deadlines.”

Corbett said that the decision on how to proceed with care.data will not be taken until the pilot has been evaluated. “We will use the pathfinder stage to determined what happens next. So what we can’t say now is how quick care.data will be rolled out following the pathfinder stage.”