care.data is back, with pilot in 500 GP practices
The government’s controversial patient record-sharing programme care.data, paused in February after noisy opposition, will be restarted as a pilot this autumn, according to NHS England’s national director for patients and information Tim Kelsey.
Appearing before the Health Select Committee on 1 July, Kelsey (pictured) argued that “people are dying because we are not linking data”, and explained that the scheme was halted “in response to very legitimate concerns about the apparent absence of safeguards for the use of data”.
The programme will now be rolled out to 500 GP practices in a pilot which will be “subject to transparent and independent investigation” to ensure “we can set a new standard”.
The pilot will be monitored by “leading voices” from the Independent Information Governance and Oversight Panel, chaired by Dame Fiona Caldicott – who told the BBC in April that the programme had been implemented with “too much hurry” and that some of her panel’s advice had not been followed by NHS England.
The decision to start the pathfinders, Kelsey said, comes after NHS England talked to almost 3,000 people “hearing a consistent series of concerns”, and following the introduction of additional safeguards in the Care Act 2014.
Kelsey, who was the government’s first executive director of transparency and open data until July 2012, emphasised the potential to improve care and save lives. But, he added, “I think it’ll take time for us to really make it happen in a way that is credible, and I think it’s a really big shame that this hasn’t already happened.”
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