UPDATED: Health bosses 'undermine trust' in patient database, say MPs

Implementation of the programme, which plans to join up data from GPs, hospitals and other care settings in order to improve care, is to be paused for six months, following concerns about public awareness and confidence in the project.

In response to questioning by Conservative committee member Charlotte Leslie, the Health and Social Care Information Centre’s director of information and data services Max Jones admitted that no code of conduct had been drawn up for the implementation of care.data. Under the terms of the 2012 Health Act, this should have taken place.

The committee’s chairman Stephen Dorrell called on the information centre to keep the committee informed about its progress in drawing up the code.

Committee member Rosie Cooper said of care.data: “The scheme is a good idea, but I have opted out because I do not trust you.”

NHS England and the information centre were accused of presiding over a “very serious muddle”, in the words of one MP.

Tim Kelsey, NHS England’s national director for patients and information, gave an assurance to the committee that data collected under care.data would “not leave the UK”.

The hearing took place after it emerged that a predecessor organisation to the information centre, the NHS information centre, had sold data to industry insurance companies. Mr Jones said the organisation should have given “greater scrutiny” to the decision at the time.

MPs also heard that controversial IT services firm Atos had been awarded a contract to provide the tools to run the General Practice Extraction Service, which will take data held by GPs for use in several national purposes, including care.data. The firm has an exclusive contract with the Department of Work and Pensions to carry out work capability assessments, although the credibility of these assessments has been repeatedly questioned.

Committee member Sarah Wollaston, a former GP, said that while the potential benefits the scheme were apparent, a communications problem – was “fundamentally undermining public trust”.

Dr Wollaston said: “There are very serious underlying problems here that need to be addressed.”

Mr Kelsey promised that during the six-month pause period, announced on 18 Feb, the health service would be launching a “very exciting” programme designed to better communicate the purpose and benefits of the data-sharing scheme.

He also explained that data available to researchers under the scheme would only go back to October 2013, due to the “labour burden” of opening up older data sets, however this could change.