23.04.14
GP practices to trial care.data after aborted launch
Between 100 and 500 GP practices in England will “trial, test, evaluate and refine the collection process” of the controversial care.data programme ahead of a national roll-out.
In a letter to all CCGs and area teams, Tim Kelsey, NHS England’s national director for patients and information, said: “We need to do more to ensure that patients and the public have a clear understanding of the care.data programme and will continue this over the coming weeks and months.”
NHS England had to abandon the planned launch of care.data in February due to concerns about the data-sharing scheme and the privacy and security implications. It was postponed by six months to give more time to develop the proposals.
Kelsey added that NHS England, alongside various stakeholders including the Health and Social Care Information Centre (HSCIC), is using this period to “listen and act” on the views of patients, the public, GPs and stakeholders, and to explain the benefits and risks involved.
He 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.
“We will work with stakeholders to produce support materials, such as an optional template letter for patients and ways of making opting-out more straightforward.”
Additionally, steps have been taken in making changes to the law.
“This will increase the protection of confidentiality and ensure there is greater transparency around the release of data by the HSCIC. This work is continuing and we will update you on these changes separately,” said Kelsey. “Over the coming months, the HSCIC will work to provide assurances over the safety of data collected, stored and shared, including the option of accessing data from a controlled environment, sometimes referred to as a ‘data-lab’ or ‘fume-cupboard’, for use by organisations requesting data.”
However Dame Fiona Caldicott, chairwoman of the Independent Information Governance Oversight Panel (IIGOP), told the BBC that in the beginning the care.data programme was “mishandled”.
She said the public information campaigns were “not clear enough”, and added that NHS England had not followed the IIGOP's advice on making the text clearer on the leaflet designed to inform every household of the programme.
In an interview with Radio 4’s PM programme on Friday, Dame Fiona added that if her panel's advice to improve the text of the leaflet had been followed, “perhaps things would not have unfolded in quite the way that they did”.
Following criticism of the care.data information campaign from professional bodies such as the BMA and the Royal College of General Practitioners, the uploading of data from GP practices was delayed by six months to the autumn. However, Dame Fiona believes this timescale may not be long enough even though the six-month delay has been “useful”.
Kelsey’s letter concluded that more will be done to ensure that patients and the public have a clear understanding of the care.data programme.
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