21 April 2016
The long-awaited data sharing review from the National Data Guardian, Dame Fiona Caldicott is complete but will not be published until after the EU referendum.
Commissioned by Jeremy Hunt in September 2015, the review will provide guidance on a new consent and opt-out model for the sharing of patient information and data security in the NHS. It will also provide standards against which the CQC can carry out inspections of NHS and social care organisations in regard to their use of data.
Originally expected in February, this new delay raised questions at eHealth week about how it would impact upon a wide range of data collection projects. The report’s recommendations will underpin the National Information Board’s many workstreams, the future Care.data project, Cabinet Office work on data sharing, and NHS England’s current consultation on expanding GP data collection projects.
The controversial Care.data programme was paused the same month the review was commissioned. The programme aimed to make more patient information available to researchers by extracting data from GP records and putting it on a central database.
Katie Farrington, director of digital and policy at the Department of Health said: “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.”
Speaking at UK eHealth week, Dame Fiona stressed the need for conversations with the public on how data is shared and explaining the benefits of data sharing. She said: “Most people trust the NHS to do the right thing with their data, but they want to know what it’s for and what the benefits are…There’s a need for ongoing explanation on how data is currently used and the benefits of data sharing and what people’s rights are.”
Dame Fiona said: “We need to have a single, simple model of opt-out and consent in regards to their data being used for other things than their health and care. We’ve come up with such a model, which we want to put before the public.”
Once the review is published it will be open for public consultation.
PHG Foundation collaborated with the Association for Clinical Genetic Science in a report highlighting the need for responsible data sharing across clinical genetics services to improve patient safety and service quality in the UK. Among the report’s recommendations was the need for leaders to build trust, develop consensus and optimise sharing within the NHS, and demonstrate the benefits and risks of sharing and not sharing, along with the call for standardised operational procedures for data sharing.