Summary
NHS Digital, the body which provides national information, data and IT services for patients, clinicians, commissioners and researchers, has entered into a memorandum of understanding (MoU) for the purpose of processing information requests from the Home Office to NHS Digital for tracing immigration offenders. The MoU was published late in 2016 and came into effect on 1 January 2017, although the practices which it now governs were being undertaken for some time before that on an ad hoc basis.
Concerns expressed about the practices enshrined in the MoU included:
- 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.
Following receipt of representations from a number of organisations, both official and non-governmental, about the practice of data-sharing governed by the MoU, we took oral evidence in a single session in January 2018. On the basis of the evidence we heard then, and exchanges of correspondence published by our predecessor Health Committee in March 2017, we wrote to NHS Digital on 29 January requesting it to suspend its involvement in the MoU and undertake a further and more thorough review of the consequences and wider implications of sharing addresses with the Home Office for immigration tracing purposes.
Ministers in the Home Office and Department of Health and Social Care and NHS Digital itself responded to our letter in late February 2018, rejecting the request to suspend the MoU. Consequently we took further oral evidence in March 2018, from the Chair and Chief Executive of NHS Digital. We were looking for a very much more convincing case for the continued operation of the MoU than had been presented so far.
We regret that we did not hear such a case. Instead, we have 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 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.
We also have serious concerns about Government policy on the confidentiality of data collected for the purposes of health and social care as expressed in the Ministers’ response to our letter to NHS Digital.
We repeat the conclusion of our 29 January letter that NHS Digital should suspend its participation in the memorandum of understanding until the current review of the NHS Code of Confidentiality is complete. It 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. Its decision should also take full account of the public health concerns raised by Public Health England and the outcome of PHE’s review of the impact of the MoU on health-seeking behaviours.
In the meantime, the review of the NHS Code of Confidentiality should also consider and consult upon the statement of Government policy on data-sharing which was contained in the Ministers’ response to our letter of 29 January, and advise Ministers on whether it is an appropriate statement of policy on the sharing of data collected and held for the purposes of health and care.
We are deeply concerned that accepting the Government’s stated position would lead to sharing non-clinical data such as addresses with other Government departments. We believe that patients’ addresses, collected for the purposes of health and social care, should continue to be regarded as confidential.
Published: 15 April 2018