UP to 500 GP practices in England will pilot the care.data programme from this autumn.
The move was announced in a letter from NHS England to clinical commissioning groups and follows a decision in February to delay implementation of the scheme by six months.
Under the care.data programme, patient information will be gathered from various NHS providers and forwarded to the Health and Social Care Information Centre (HSCIC) where it will be used by healthcare commissioners to assess the safety and quality of local services. The information can also be used by NHS organisations to plan and design better services.
But it was criticised by health professionals and patient groups who said not enough had been done to raise awareness of how it would work. Concerns were also raised over the use of confidential patient data.
Now NHS England has said between 100 and 500 GP practices will be asked to “trial, test, evaluate and refine the collection process ahead of a national roll out.”
An independent care.data advisory group has been set up and will be chaired by Ciaran Devane, chief executive of Macmillan Cancer Support and one of NHS England’s non-executive directors.
NHS England also moved to address concerns over confidentiality and said “steps have already been taken in making changes to the law”. They say this will increase the protection of confidentiality and ensure greater transparency around the release of data by the HSCIC.
Among the options being considered by the HSCIC is for information to be accessed from a controlled environment, known as a “data lab” or “fume cupboard”, by organisations requesting data.
In the letter to CCGs, NHS England 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.
“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 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.”
They invited healthcare professionals to submit their views and suggestions to “improve and build confidence” in care.data and promised regular updates on the programme’s progress.