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What future is there for UK's Care.data info sharing scheme?
Hated by privacy campaigners, in a pilot stage, and now a year late
The future of the controversial Care.data scheme will be dependent on the outcome of a much-scaled back pilot programme which started this autumn, meaning that at best it will arrive one year late, a report revealed Friday.
Care.data is a mega IT programme intended to connect information on GP records with the Health and Social Care Information Centre. It was originally planned to be rolled out in Spring 2014.
However, the scheme was put on ice for six months following a public outcry that the NHS had failed to properly consult on the privacy concerns of sharing data.
A report from the All Party Parliamentary Group (APPG) for Patient and Public Involvement has revealed that further delays are likely to occur, as NHS England awaits the outcome of its pilot programme.
The report said NHS England confirmed a "pathfinder stage" for the Care.data programme, of between 100 and 500 GP practices in the autumn of 2014. What happens next will depend on the outcome of the pilot.
No dates have yet been released as to when NHS England will make a decision to go ahead (or not) with the scheme, but it is expected to occur in the in spring of next year, said a APPG spokesman.
"The APPG will discuss the progress of the Care.data programme at a meeting in 2015. If necessary, NHS England’s Care.data team will be asked to report on how the programme has progressed. The APPG can then decide whether to take any further action," said the report.
In October, the APPG opened an inquiry into the lack of publicity, clarity and patient involvement in the programme, and concerns around data being shared with private sector organisations.
Katherine Murphy, chief executive of the Patients Association, said: "Patients and the public are broadly supportive of the principle of using health data for research that is in the public interest."
"However, many people still have deep concerns about the programme and are worried about how their personal data will be used," she added. ®