Scrapping NHS Digital a backward step for patient data rights

Scrapping NHS Digital and folding it into NHS England will probably be a “significant retrograde step” in the case of safeguarding patient privateness rights, notably within the wake of ongoing issues over data gathering of patient information, a former well being service official has warned.

The overhaul of NHS IT, introduced in November 2021, will see each NHS Digital and NHSX come beneath the management of NHS England and Improvement (NHSE/I) in a transfer the Department of Health and Social Care (DHSC) claims will enhance care, centralise the NHS workforce, and speed up total digitisation.

The reforms will see NHS Digital grow to be the well being providers CIO directorate, and NHSX will serve the transformation directorate’s technique perform. Health Education England can also be 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, mentioned the plans would endanger the rights of residents in regard to how their data is collected and utilized by the well being service.

Manning, who give up after a disagreement over the publication of statutory statistics, argued that the Health and Social Care Act of 20212 had already given NHS England an excessive amount of oversight of NHS Digital, and that since 2016 its affect over the physique 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 unbiased statutory physique in NHS Digital, charged with defending patient rights, is itself unlucky. But handing that physique 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 mentioned that this was notably vital in gentle of the debacle that unfolded final yr across the proposed General Practice for Data Planning and Research (GPDPR) scheme, wherein the mass “data scrape” of GP data was closely criticised.

The programme was mentioned to be poorly offered to most people, with the outcome that enormous numbers selected to choose out amid confusion over the programme’s scope. It was in the end placed on maintain, with no agency date for its introduction.

He accused NHS England of getting taken the method that present steerage and rules with regard to its use of patient data was “seen as unnecessary”, and instructed that it had failed to contemplate that lots of its inside priorities could also be at odds with these of people or teams by way of useful resource allocation and repair entry. Across the board, he mentioned, permitting decision-making to be pushed by opaque use of data would in the end undermine patient belief within the NHS.

Manning known as for “robust, external, independent scrutiny” of NHS England to be put in place, proposing that the National Data Guardian be awarded a simpler oversight remit. He additionally known as for a statutory requirement of transparency to power NHS England to permit sufferers to search out out what data the NHS holds them, who can entry it, and what they will 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 touch upon Manning’s letter, saying that the final word choice to carry NHS Digital beneath its purview was right down to the federal government. The Department for Health and Social Care had not responded to a request for remark on the time of publication.