CCG care.data pilot work continues
Southwest commissioning group says local pathfinder surgeries ready to begin testing how data sharing may work under the scheme after anticipating delays to its work
Somerset Clinical Commissioning Group (CCG) has said work is continuing around how best to engage patients ahead of the planned launch of NHS England's care.data programme, although the process to actually begin extracting patient information is thought to remain a long way off.
The care.data programme is a national initiative which hopes to eventually use anonymised patient data extracted from their GP and hospital medical records to improve the health of the nation. Its launch has been delayed from last year due to criticisms and concerns from pressure groups and GPs over how health authorities intended to explain the implications to patients of how their details would be collected and shared between different organisations.
Somerset CCG late last week issued a briefing document (download here) announcing NHS England had asked the four areas chosen to pilot the project "to temporarily pause their activities".
It is understood that Somerset's statement around pausing the programme had been issued "prematurely" late on Friday as a result of confusion over the implications of a wider data review, according to sources with knowledge of care.data.
Somerset's briefing was issued shortly after health secretary Jeremy Hunt announced he would be launching a review of security standards for patient data across the NHS. The work is expected to directly involve national data guardian Dame Fiona Caldicott, whose independent oversight role is also expected to be "strengthened" as a result.
With this review expected to continue until January, Dame Caldicott will also set out best practice for how consent models and opt-outs relating to care.data are worded to try and ensure public support of the programme.
However, the CCG today said that based on the remit of the review process, it had presumed incorrectly last week that it would be required to pause work as part of the pathfinder process.
Government Computing understands that NHS England has since told the CCG that it could continue existing pathfinder work with patients and stakeholders as its data security review continues throughout the autumn.
The CCG said that no dates had so far been provided for when the programme will begin testing or go live, noting that some GP surgeries selected to help trial the service in the area were ready to begin testing how information will be shared through care.data.
A spokesperson for Somerset CCG added that this testing would not involve extraction of actual patient data, which was expected to occur a "long way down the line".
However, with Dame Caldicott reviewing the implications and wording around the programme as part of a wider patient data security review, the CCG said it would welcome opportunities to provide feedback on the programme as part of the ongoing process.
Despite confusion around the impacts of the data review commissioned by Jeremy Hunt on care.data, Blackburn with Darwen CCG - another of the four pathfinder groups - said its existing work on the programme was continuing as normal. A spokesperson added that discussions were continuing with patients and other stakeholders around the "messaging" used to inform individuals about care.data.
Of the remaining CCGs chosen as pathfinders, West Hampshire referred any queries on care.data to NHS England, which is leading the programme overall.
Clarifying the current status of the programme, NHS England said that despite Somerset's earlier claim, it had not opted to pause care.data or its work with the selected pathfinder organisations. The organisation added it would also avoid setting "artificial timelines" concerning a go-live date in an attempt to get the programme right.
"The public interest is best served by a proper debate about the nature of a person's right to opt out of data sharing and we will now have clarity on the wording for the next steps in the programme," said a statement from NHS England.
After her appointment as data guardian last November, Dame Caldicott has maintained that she will not allow data extraction through care.data to occur without certainty that a number of clarifications around privacy have been addressed.