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Up to 500 GP practices to test plans to share patient data

Actual rollout of care.data awaits 'greater assurances' on privacy from UK.gov

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NHS England will trial its new national pseudonymised patient data collection scheme with "between 100 and 500 GP practices" ahead of the full launch of the programme, it has confirmed.

In a letter to healthcare professionals (two-page/50KB PDF), national director for patients and information Tim Kelsey said that a "phased rollout" of the care.data scheme would enable the NHS to "trial, test, evaluate and refine the collection process ahead of a national rollout".

This trial will begin in the autumn, according to the letter.

The trial is one of the first recommendations of the recently established independent care.data advisory group, chaired by Macmillan Cancer Support chief executive Ciaran Devane.

The announcement effectively further postpones the full national launch of the scheme, which was originally due to start in April. In February, NHS England announced that the scheme would be postponed by six months after admitting that it had failed to explain sufficiently how patients' data would be used and how individuals could exercise their right to opt out.

Under the 2012 Health and Social Care Act, a new Health and Social Care Information Centre (HSCIC) was given the power to require the gathering of certain patient data gathered from GP surgeries in England to add to the patient data already gathered by hospitals in a new "care.data" database unless individuals opt out.

This data will be used to improve health services, although HSCIC also has the power to grant third parties access to the data it collects for certain purposes and under certain circumstances, including for medical research.

According to Kelsey's letter, the first phase of the care.data scheme will involve linking data from hospitals with general practice. The scheme will ensure that "more joined-up data is made available to clinicians, commissioners, researchers, charities and patients to improve the quality, safety and effectiveness of local care services", he said.

The letter also confirms that changes will be made to the law to increase the protection of patients' confidentiality and ensure greater transparency around the release of data by HSCIC. Although this work is ongoing, Kelsey said that the HSCIC was considering protecting data by only allowing organisations requesting it to access it from a "controlled environment"; a technique sometimes referred to as a "data lab" or "fume cupboard".

NHS England also planned to continue its work on ensuring a clearer understanding of the scheme by patients and the public over the coming months, and to produce "more straightforward" support materials such as opt-out template letters for patients, Kelsey said.

"In particular, we have been asked to provide greater assurance on issues such as: patients' right to object to their identifiable data being shared; protecting privacy; the NHS England: High quality care for all, now and for future generations burden on GPs; and the controls around data," he said in the letter.

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