Gov’t suspends controversial NHS data sharing deal

A Memorandum of Understanding (MoU) between the NHS and the Home Office on data sharing has been suspended, and going forward Home Office immigration staff can only ask for data to help trace people in danger of being deported because they have committed a serious crime.

Last month the Health and Social Care Committee voiced "serious concerns" about NHS Digital’s ability to protect patient data after reviewing the MoU, and said it was not satisfied that the chair and chief executive of NHS Digital had been "sufficiently robust in upholding the interests of patients, understanding the ethical principles underpinning confidentiality, or in maintaining the necessary degree of independence from Government".

The report also highlighted that knowing information may be passed to immigration authorities could deter people from seeking treatment, "resulting in detriment to the individuals concerned, hazard to public health, and greater cost to the NHS due to more expensive emergency treatment needing to be administered later."

MPs urged suspension of the MoU until the current review of the NHS Code of Confidentiality is complete, which they stressed should include "proper consultation" with all interested parties and full involvement of experts in medical ethics.

"We welcome the Home Office’s response to the concerns expressed by the Health Select Committee and its willingness to adapt its tracing requests to better align with established codes of practice within the clinical community," said Sarah Wilkinson, chief executive at NHS Digital.

"The narrowing of the tracing service to only those individuals convicted of more serious criminal offences, or who represent a risk to public security, circumvents the difficulties which have arisen as a result of conflicts between existing legislation and case law and the long-established Codes of Confidentiality of the GMC and various Colleges."

Dr Tim Dudderidge, president of Doctors of the World, called the decision "a victory for doctors, patients and everyone who has fought for access to healthcare for the most vulnerable in our society".

"The MoU made many patients too frightened to see a doctor. Within a health service founded upon the principle of putting patients first, the deal compromised patient confidentiality without the knowledge or consent of its doctors."

Professor Helen Stokes-Lampard, chair of the Royal College of GPs, also welcomed the move.

"We are extremely pleased and relieved that the Government has suspended the data-sharing agreement that has been in place with NHS Digital - it is a huge victory for common sense, for civil rights and for high-quality patient care.

"This is what is best for our patients, and it is what is best for doctors, who are trusted to keep our patients’ data safe but have recently felt as if the relationship we have with our patients has been compromised.

"It is now important that we work to re-establish any trust that may have been lost around how NHS data is used – and that any future data-sharing agreements that involve NHS data are properly risk-assessed and frontline clinicians consulted before they are finalised, so that we don’t ever find ourselves in a similar situation again."

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