HSCIC confident in care.data

The Health and Social Care Information Centre is confident that its current communications plans for care.data will be passed by the UK’s data guardian Dame Fiona Caldicott.

Speaking to Digital Health News at the Health+Care event in London yesterday, care.data programme manager Eve Roodhouse said the team is responding to every item highlighted in a report published by Dame Fiona’s Independent Information Governance Oversight Panel last December.

Her team is also in regular contact with Dame Fiona regarding plans to communicate the project to the public.

“When we get into evaluation with Dame Fiona, we have a really high level of confidence that we have addressed those things [in the report]. There is a constant feedback loop so we are not waiting until the end to talk to her.”

The care.data programme is intended to extract data sets from different NHS organisations, starting with GP practices, and link this information to an expanded set of Hospital Episode Statistics within a data centre at the HSCIC.

The programme got off to a false start in February 2014, when outcry from privacy groups about the lack of clarity on how patients could ‘opt out’ of the programme forced NHS England and the HSCIC to put care.data on hold while an effective communications plan was developed.

Roodhouse said the most important change this time around is the use of four ‘pathfinder’ clinical commissioning groups: Blackburn with Darwen; Somerset; West Hampshire; and Leeds.

Roodhouse said the care.data team has been working the pathfinders since last autumn on developing communications material surrounding the programme, including individually addressed letters to be sent to every patient aged over 15 and-three-quarters, explaining care.data and the right to opt-out if they wish.

HSCIC and NHS England has gathered input from several groups on the development of these materials, including the Carers’ Trust to create a process for people who care for others and the Who Cares Trust to develop a booklet for teenagers.

Accessible materials are also being developed, including different translations of information and braille versions. “Each pathfinder area is being encouraged to think about their own populations and what they need to deliver,” said Roodhouse.

Digital Health News reported this month that Blackburn with Darwen CCG will start communicats about the programme by the end of this month, while  Somerset and West Hampshire will begin testing by the end of September. Leeds has not confirmed a timescale, but is working towards the end of September.

Roodhouse added that information will only be collected from those who choose not to opt-out and once Dame Fiona has advised the health secretary that she is satisfied with the arrangements and safeguards in place.

Roodhouse said the aim of the pathfinders is to prepare the HSCIC and NHS England for the national roll-out of care.data, but said they were refusing to give a timescale for this stage of the process.

This comment was backed by Tim Kelsey, NHS England’s national director for patients and information, who said: “we are not doing this to particular timetable. We just have to get it right.”

Kelsey, who has overall responsibility for the care.data programme, described how NHS England and the HSCIC had, “learned a lot from the previous attempt to communicate” the programme.

He said the pathfinders are working at their own pace to test how people feel about being informed with this new approach.

He added that it is crucial for NHS England to, “make the case to a large enough number of people that sharing data is fundamental”, as it will help the health service identify areas of good practice and reduce variation in quality of care. "If we can't make the case for that then we will be in a very difficult situation,” Kelsey said.