Caldicott and care.data stalled by EU referendum ‘purdah’

Dame Fiona Caldicott’s most recent review of data sharing will not be published until after the referendum on membership of the European Union, it has been revealed.

The review was commissioned by health secretary Jeremy Hunt in September 2015 and asked Dame Fiona to look at data security, consent and opt-out.

It also asked Dame Fiona to develop standards against which the CQC can carry out inspection of NHS and social care organisations in regard to their use of data.

At this week’s e-Health Week event in London, Dame Fiona revealed that the report is complete.

However, it will not be published until after 23 June because of civil service ‘purdah’ restrictions put in place ahead of the referendum; the official political campaigns for which are now underway.

This leaves NHS and social care organisations, as well as the CQC, waiting for recommendations that will determine the future of a wide-range of data collection projects.

The delay was greeted with dismay at e-Health Week, where questions were raised about the impact on the National Information Board’s many workstreams, the care.data project, Cabinet Office work on data sharing, and NHS England’s current consultation on expanding  GP data extraction.

Katie Farrington, director of digital and data policy at the Department of Health, said there were clear implications for all this work.

She said: “We have always said that the Cabinet Office work on data sharing will be done carefully with regard to health and will be in line with Dame Fiona’s recommendations. The Cabinet Office work will flow on and will be consistent.

“With regard to care.data and the GP dataset, we are still in the same position; which is that the work is pending the work that Dame Fiona is doing.”

Care.data is the highly controversial project to expand the Hospital Episode Statistics, to link them to other data sets, starting with GP data, and to make the resulting information available to researchers and others.

It was effectively put on hold after a public outcry over a public information campaign that failed to mention it by name or to include an opt-out form.

Four clinical commissioning groups are supposed to be piloting the project, and new information materials, but these have been stalled since Hunt’s decision to ask Dame Fiona to conduct her latest review last autumn.

Dame Fiona told e-Health Week that when it is published her report goes out to public consultation.

She indicated that she and her team have developed “a single, simple model for patients to use to determine the use of their data beyond their own personal care”; something she half-joked many commentators had thought impossible.

She said she also hoped to provide data sharing standards that are clear, relevant and feasible for health and social care providers to achieve.