NHS delays GP data scheme following backlash
The NHS has pushed back its plans to pool the full medical histories of 55m patients in England into a single database after extensive pressure from campaigners, politicians and patients.
NHS Digital, which runs the health service’s IT systems, confirmed plans for the database, which will be made available to academic and commercial third parties for research and planning purposes.
However, Lord James Bethell, the junior health minister in the House of Lords, said on Tuesday that the programme, which was originally scheduled for July 1, would now be delayed by two months to September 1.
“We will use this time to talk to patients, doctors, health charities, doctors and others to strengthen the plan, build a trusted research environment and ensure that the data is accessed securely,” said Bethell.
Simon Bolton, chief executive of NHS Digital, said: “We are absolutely determined to take people with us on this mission. We take our responsibility to safeguard the data we hold incredibly seriously.”
The government was last week threatened with an injunction if it did not pause the plans, with signatories including Conservative MP David Davis warning that the programme would be “unlawful” without patient consent. In response to the allegation, NHS Digital said that the plan had been cleared with the Information Commissioner’s Office.
Labour MP Jonathan Ashworth, the shadow health secretary, had also called for the rollout to be delayed, saying that sensitive data such as “termination of pregnancy, matters of domestic or sexual abuse, issues of substance misuse or alcohol abuse” was being shared without patient knowledge.
Addressing Matt Hancock, the health secretary, in the House of Commons on Monday, Ashworth asked: “Given the secrecy, given the haste and given the difficulties in opting out, will he not now consider abandoning this, pausing this for now and launching a transparent consultation process with patients and clinicians?” he said.
Elizabeth Denham, the information commissioner, said: “It is clear that there remains considerable confusion regarding the scope and nature of the [data-sharing plans], among both healthcare practitioners and the general public . . . It is sensible for NHS Digital to take more time to engage with its stakeholders, and consider the feedback it is receiving about its plans.”
At the House of Lords on Tuesday, Baroness Sal Brinton, the Liberal Democrat spokesperson for health, asked why a data protection impact assessment had yet to be published, to which she did not receive a direct response.
She told the Financial Times that she was concerned about the non-publication and whether it was deliberate or “a cock-up”.
“Clearly, the minister did not understand what I was asking . . . I suspect the non-publication of the DPIA is one of the ICO’s issues,” she said.
The delayed rollout would give the NHS just three extra weeks, after accounting for the six-week summer holidays, Baroness Brinton added. Campaigners have said it remains unclear how The Department of Health and Social Care will handle the issue going forward.
“Now the government needs to meaningfully involve people and answer key questions. How will the trusted research environment work? On what terms will corporations be given the keys to the incredible asset that is the nation’s health data?” said Cori Crider, co-founder of digital rights group Foxglove, which was one of the parties threatening legal action.
“This data belongs to patients, and they fund the NHS so it should be their choice. But for now, we and our partners are pleased that, however belatedly, the government saw sense.”