Government 'failing to act on serious concerns about NHS data sharing' raised by doctors

MPs accuse government of ‘wholly unsatisfactory’ response after it refuses to act on warnings that immigrants are ‘too frightened’ to access healthcare because of data-sharing policy

MPs warned earlier in the year that NHS Digital was failing to uphold the interests of patients with the existing Memorandum of Understanding (MoU), which sees NHS Digital share patient data with the Home Office for immigration tracing purposes (Getty)

The government has been accused of failing to act on “serious concerns” raised by doctors and MPs about an NHS policy that sees patient details shared with immigration authorities.

The Health and Social Care Committee warned earlier this year that NHS Digital was failing to uphold the interests of patients with the existing memorandum of understanding (MoU), through which patient data held by NHS Digital is shared with the Home Office for immigration tracing purposes.

It followed an evidence session on the subject in January, which heard that illegal immigrants were “too frightened” to access healthcare because of the data-sharing agreement, with many being “driven underground” by the legislation.

This led the committee to write to NHS Digital requesting it to suspend its involvement in the MoU and undertake a further review of the implications of sharing addresses with the Home Office.

But the government rejected the request, which the committee has deemed a “wholly unsatisfactory” response. The chief executive of NHS Digital was subsequently summoned to give further evidence to the committee.

The MPs have now repeated their call for NHS Digital to suspend its participation in the memorandum of understanding until the current review of the NHS code of confidentiality is complete.

Dr Sarah Wollaston, chair of the committee, said: “There is a clear ethical principle that address data held for the purposes of health and care should only be shared for law enforcement purposes in the case of serious crime.

“NHS Digital’s decision to routinely share information with the Home Office with a lower threshold is entirely inappropriate. This behaviour calls into question NHS Digital’s ability to robustly act on behalf of patients in the event of other data-sharing requests including from other government departments in the future.”

A new report by the committee states that there must be a proper consultation with all interested parties, with the full involvement of experts in medical ethics, and that the decision should also take “full account” of the public health concerns raised by Public Health England.

“It is absolutely crucial that the public have confidence that those at the top of NHS Digital have both an understanding of the ethical principles underpinning confidentiality and the determination to act in the best interests of patients,” Ms Wollaston added.

The demand is backed by doctors and charities, who said the MoU is already having a detrimental impact, with patients refraining from accessing the care they need and doctors feeling pressured to share patient data with the Home Office.

Dr John Chisholm, medical ethics committee chair of the British Medical Association (BMA), which has been vocal in its opposition to this data-sharing arrangement, said it risked “undermining the very foundation of the doctor-patient relationship” and urged NHS Digital to suspend the MoU “immediately”.

“We welcome this report, which echoes many of our key concerns over the ill-thought out and potentially destructive agreement that NHS Digital is yet to resolve,” he continued.

“As stated by the committee, most immigration offences clearly do not meet the high public interest threshold for releasing confidential data, which according to NHS England, the General Medical Council and even NHS Digital’s own guidance, should be reserved for cases which involve ‘serious’ crime.

“The issue of data sharing raises a number of ethical issues for doctors, who are bound by principles of confidentiality, so it is quite simply astounding that no professional medical ethicist was approached in the supposed ‘meaningful’ consultation ahead of the MoU’s introduction.”

Professor Helen Stokes-Lampard, chair of the Royal College of GPs, meanwhile warned that the Home Office was displaying a “blatant disregard” for the GP-patient relationship, warning that the policy risked “alienating highly vulnerable patients”.

“It is treating GP patient data like the Yellow Pages, and we are calling on NHS Digital to take urgent measures to suspend the agreement that is allowing them to do so,” she said, adding that the examples the college was hearing about were becoming “increasingly alarming”.

Deborah Gold, chief executive of National Aids Trust (NAT), highlighted that mistrust in the NHS risked work being “undone” and could lead to a “public health risk”.

“As an HIV charity, we understand the importance of treating infectious conditions and limiting the spread of epidemics. When people can’t trust the NHS with their data, that good work is undone and we face a public health risk.

“There is nothing to be said for this practice, which deters people from accessing healthcare. Data sharing should have been stopped when the Health and Social Care Committee first called for it, and it certainly should stop now they have, for a second time, demanded an end to this short-sighted and unethical practice.”

Lucy Jones, director of programmes at Doctors of the World, which runs clinics for undocumented migrants and asylum seekers, said she saw the “incredibly harmful impact” the data-sharing deal has on patients “day in, day out”.

“It has reached a point where people do not want to give the NHS their contact information out of pure fear. While confidentiality is in such a precarious state, mothers are not accessing the antenatal care they need, public health is put at risk, and we fear this is only going to get worse,” she added.

The government has been approached for comment.