Launch of opt-out care data sharing scheme to be postponed until autumn, NHS England announces

Out-Law News | 20 Feb 2014 | 11:28 am | 2 min. read

The start of a new data sharing scheme involving the pseudonymised medical records of those who do not opt out will be postponed to give patients more time to learn about its benefits and safeguards, NHS England has announced.

Tim Kelsey, national director of patients and information at NHS England, said that body would now begin collecting information from GPs "in the autumn", rather than from April as originally planned.

"NHS England exists for patients and we are determined to listen to what they tell us," he said. "We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months."

Under the new scheme, GP surgeries in England will hand over the personal medical records of their patients to the Health and Social Care Information Centre (HSCIC), where it will be stored in a new 'care.data' database. HSCIC has the power to compel the gathering of data from GPs under the 2012 Health and Social Care Act, although individuals will be able to opt out of the scheme through their GPs. HSCIC will have the power to grant third parties access to the data it collects for certain purposes and under certain circumstances.

According to NHS England, three broad categories of data will exist under the scheme. HSCIC will publish data sets where individual patient information has been aggregated and anoymised, but personally identifiable data could also be disclosed where there is a legal requirement for that information to be made available, such as in a public health emergency. This data may also be made available to other organisations in the future with individuals' explicit consent, or where legal approval has been granted to those organisations to access the information.

A third, pseudonymised, category of information will exist under the care.data programme, which will not be published but which will be disclosed to "approved analysts for approved purposes", according to NHS England. Names, addresses, postcodes and NHS numbers of patients will be 'stripped' from this data before it is disclosed.

In a statement, NHS England said that the delay was in response to feedback from patients, doctors and their representative bodies, including the British Medical Association (BMA). It said that it would use the time to "develop additional practical steps to promote awareness with patients and the public" in association with patients and professional groups. It also plans to "look into further measures that could be taken to build public confidence", particularly in relation to scrutiny of the ways in which the information collected under the scheme would be used.

It has not announced any amendments to the scheme as initially proposed, and will now work with "a small number of GP practices" on a voluntary basis to test the quality of the data, it said.

NHS England has said that the care.data programme will be used for the benefit of patients, including through enabling it to monitor standards of care and clinical safety in different areas, and in cases where people with long-term conditions are being treated away from hospital. The database will also be used to support research into new medicines and the treatment of disease, it has said.

The BMA said that it supported the use of anonymised data to improve healthcare services, as long as patients had been properly informed about the scheme and their rights under it.

"It was clear from GPs on the ground that patients remained inadequately informed about the implications of care.data," said Chaand Nagpaul, chair of the BMA's GPs committee.

"While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted," he said.