Scrapping NHS Digital a backward step for patient data rights

Scrapping NHS Digital and folding it into NHS England will be a “significant retrograde step” when it comes to safeguarding patient privacy rights, particularly in the wake of ongoing concerns over data gathering of patient records, a former health service official has warned.

The overhaul of NHS IT, announced in November 2021, will see both NHS Digital and NHSX come under the control of NHS England and Improvement (NHSE/I) in a move the Department of Health and Social Care (DHSC) claims will improve care, centralise the NHS workforce, and accelerate overall digitisation.

The reforms will see NHS Digital become the health services CIO directorate, and NHSX will serve the transformation directorate’s strategy function. Health Education England is also to be merged into NHSE/I.

In a letter to the British Medical Journal (BMJ), Kingsley Manning, who stepped down from the chair in 2016, said the plans would endanger the rights of citizens in regard to how their data is collected and used by the health service.

Manning, who quit after a disagreement over the publication of statutory statistics, argued that the Health and Social Care Act of 20212 had already given NHS England too much oversight of NHS Digital, and that since 2016 its influence over the body had grown.

“This is an important and retrograde step not least in the context of this government’s clear intent to weaken the constraints on the use of patent data, as set out in the consultation document, Data: A new direction,” wrote Manning.

“Doing away with an independent statutory body in NHS Digital, charged with defending patient rights, is itself unfortunate. But handing that body and its powers to NHS England, is a grave error.

“In effect, NHS England will be able to decide that its legitimate interest[s] override those of the citizen and the patient, with little or no external constraint or scrutiny. With no requirement for transparency and with additional barriers to citizens asking for information about the use of their data, individuals may never know what NHS England chooses to do with their data,” he wrote.

Manning said that this was particularly important in light of the debacle that unfolded last year around the proposed General Practice for Data Planning and Research (GPDPR) scheme, in which the mass “data scrape” of GP data was heavily criticised.

The programme was said to be poorly sold to the general public, with the result that large numbers chose to opt out amid confusion over the programme’s scope. It was ultimately put on hold, with no firm date for its introduction.

He accused NHS England of having taken the approach that existing guidance and regulations with regard to its use of patient data was “seen as unnecessary”, and suggested that it had failed to consider that many of its internal priorities may be at odds with those of individuals or groups in terms of resource allocation and service access. Across the board, he said, allowing decision-making to be driven by opaque use of data would ultimately undermine patient trust in the NHS.

Manning called for “robust, external, independent scrutiny” of NHS England to be put in place, proposing that the National Data Guardian be awarded a more effective oversight remit. He also called for a statutory requirement of transparency to force NHS England to allow patients to find out what data the NHS holds them, who can access it, and what they can do with it.

“The demise of NHS Digital will go unnoticed by the vast majority of the population. But its absorption into NHS England is a step in the wrong direction, signalling a policy approach which not only challenging the basic right of patients with respect to their own data, but may also, ultimately, prove self-defeating,” he warned.

NHS England declined to comment on Manning’s letter, saying that the ultimate decision to bring NHS Digital under its purview was down to the government. The Department for Health and Social Care had not responded to a request for comment at the time of publication.