The Care.data programme will continue as an opt-out scheme, despite calls from various health organisations for the programme to change to be explicitly opt-in.
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Speaking at a House of Commons Health Committee, Tim Kelsey, national director for patients and information, NHS England, said Care.data needed to be an opt-out scheme.
Kelsey said people who most need the health service are also those least likely to opt in to the Care.data programme.
“In order to plan services as effectively as possible, we need to have as much data as possible,” Kelsey told the Commons health committee.
Kelsey said NHS England was looking at an option for patients to opt out of their data being used by third parties such as insurers, but remain opted-in for medical research.
The controversies surrounding the plans, to expand the collection of patient care data from hospitals to include general practice, came to a head in February 2014 when a failure to explain the benefits to the general public forced the NHS to put the plans on hold for six months.
Research by the British Medical Association (BMA) suggested almost half of patients were unaware of the plans to use their confidential medical data in this way, despite a national awareness campaign.
NHS pilot data study in GP surgeries
In June 2014, NHS England announced it was abandoning its roll-out plan, with plans to conduct trials with 500 GP surgeries instead.
During the committee hearing, Kelsey said that, during the trials, NHS England would investigate whether sending out letters would be a good way of informing patients of their right to opt out of the scheme.
Kelsey also said he expected the trials to begin extracting data in late October to early November 2014. But he said there were many “preconditions to be met” before NHS England could start including the publication of the Information Centre code of practice as well as the Care Act; as well as the conditions for a “sealed environment” for the data.
He said he expected NHS England to consider the pilots a month after the beginning of data extraction, and there would be a lot of consideration, including whether to decide on conducting further pilots.
But Kelsey was quick to point out that the organisation would not subscribe to artificial deadlines and, if it felt uncomfortable with the pilots, it would delay them.