NHS Digital “failing” to uphold patient interest – refuses to stop sharing data with Home Office

SUMMARY:

A report released by the Health and Social Care Committee states that it is “not satisfied” with NHS Digital and its leadership.

NHS HealthNHS Digital and its leadership has been heavily criticised by MPs on the Health and Social Care Committee for failing to uphold patient interest, after it has refused to stop sharing data with the Home Office.

NHS Digital, the body which provides national information, data and IT services for patients, clinicians, commissioners and researchers, entered into a memorandum of understanding (MoU) with the Home Office in January 2017, for the purpose of tracing immigration offenders.

Although the MoU came into effect in January last year, the practices which it now governs were being undertaken for some time before that on an ad hoc basis.

NHS Digital argues that it only shares non-clinical information with the Home Office, but the Committee is concerned that sharing data with other government departments, such as patients’ addresses, will become normal practice.

The Committee’s report states that NHS Digital is undermining the trust between patients and the NHS, where patients assume a level of confidentiality when their data is handed over. The report criticises NHS Digital’s leadership for failing to understand the ethical principles underpinning confidentiality, or in maintaining the necessary degree of independence from Government.

Chair of the Committee, Dr Sarah Wollaston, says

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.

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.

Concerns expressed about the practices enshrined in the MoU include:

  • incompatibility between the disclosure of information about people in contact with health services and the obligations of confidentiality assumed to apply to that information;
  • the risk that sharing of patients’ addresses with other Government departments will become accepted as normal practice;
  • the wider effect on public perception of the confidentiality of data supplied to the NHS; and
  • the knowledge that 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.

The number of tracing requests received by NHS Digital relating to immigration investigations by the Home Office exceeded 6,000 in 2015-16.

Not good enough

Following concerns expressed about the MoU from a number of organisations, the Committee took oral evidence in a session in January of this year. Following this session, the Committee wrote to NHS Digital requesting it suspend its data sharing agreement with the Home Office and asked i to undertake a further and more thorough review of the consequences relating to the MoU.

The government denied request, which prompted the Committee to take further evidence from the Chair and Chief Executive of NHS Digital. It stated that it was “looking for a very much more convincing case for the continued operation of the MoU than had been presented so far”, but that it “did not hear such a case”.

Instead, the Committee states that it has been “left with serious concerns about the ability of the Chair and Chief Executive of NHS Digital to understand, and act in accordance with, NHS Digital’s role as a steward of health and social care data”.

The report adds that the leadership of NHS Digital has not been sufficiently robust in upholding the interests of patients or in maintaining the necessary degree of independence from Government.

As a result, the MPs on the Committee have repeated their earlier conclusion and said that NHS Digital should suspend its participation in the MoU until a review of the NHS Code of Confidentiality is complete. NHS Digital, the Committee adds, should make a decision on whether the practice of data-sharing for immigration tracing purposes should continue in the light of the reviewed Code, after proper consultation with all interested parties, and with the full involvement of experts in medical ethics.

Finally, the MPs said that they are “deeply concerned” that accepting the Government’s stated position would lead to sharing non-clinical data such as addresses with other Government departments. The report argues that “patients’ addresses, collected for the purposes of health and social care, should continue to be regarded as confidential”.

Responding to the report’s findings and the Committee’s request to suspend the MoU, NHS Digital’s Chief Executive, Sarah Wilkinson, has issued the following statement. She said:

We will consider the Health Select Committee’s report carefully and will take into account any new evidence as it becomes available, but we have been through a rigorous process to assess the release of demographic data to the Home Office. This has established that there is a legal basis for the release and has assured us that it is in the public interest to share limited demographic data in very specific circumstances.

My take

Whilst data sharing can be a useful mechanism for government bodies to tackle crime, improve services and instil further trust between Whitehall and citizens, this should not be done without proper oversight and should not undermine the public’s view of what is appropriate. Given the recent furore over Facebook’s data sharing practices, the government should not take this report lightly. Making assumptions about the public’s level of acceptability around data sharing can result in pushing back an appropriate data sharing agenda. The government’s response is bullish and it is not consulting effectively about the concerns being expressed. In my opinion, it should suspend the MoU, consult with medical bodies and ethics professionals, and then publish guidance for wider public consultation before sharing any data further.

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