Health and Social Care (National Data Guardian) Bill — House of Lords, 2018-10-26
Topic: Health
Dorothea Glenys Thornton (Labour, Centre-left): My Lords, I pay tribute to the noble Baroness, Lady Chisholm, for bringing the Bill before us today. I join her and others in paying tribute to Dame Fiona Caldicott. The Bill has the support of these Benches The purpose of the Bill, as noble Lords have said, is to establish a statutory footing for the National Data Guardian for Health and Social Care. This role is responsible for providing advice and guidance to all the relevant parties regarding the processing of health and adult social care data in England. I agree with other noble Lords that the NDG is vital in helping to ensure that confidential health and care data is used and shared appropriately, upholding and protecting high standards for medical confidentiality. As the noble Lord, Lord Patel, said, it is very important that the organisation that is already providing this crucial function has wended its way into this position. We welcome the fact that that is to be recognised in statute As noble Lords know, the Information Commissioner’s Office is the regulator for compliance with the general data protection regulation and the Data Protection Act, but there is no equivalent national regulator for the confidentiality of personal healthcare data—information provided by a patient to a healthcare professional for the purposes of receiving care or treatment—despite significant public interest in maintaining a confidential healthcare service. We on these Benches support the creation of a statutory basis for the National Data Guardian’s role, given the hugely important role that it plays in this area. I thank noble Lords and the National Data Guardian for the consultation and discussions that all stakeholders have been able to take part in in preparation for the Bill. We have appreciated that. That is in sharp contrast to the conduct regarding the Mental Capacity Bill. If I might swerve slightly for a moment, I was shocked to learn that the Minister and his colleagues have rejected a freedom of information request about the consultation that they carried out before the Mental Capacity Bill was introduced to the House, which was also in sharp contrast to the level of transparency and consultation by the Law Commission when it looked at mental capacity. I feel I need to say to the Minister that he really could learn a few things about how to manage complex policy issues from the National Data Guardian and indeed the Law Commission I return to the Bill. The circuitous route to get here, which was mentioned by the noble Lord, Lord Patel, has actually been beneficial to where we have ended up and what we have before us. I welcome the fact that the Bill includes the social care data and the importance of protecting patients’ data wherever they find themselves in the health and social care system. I echo and agree with my noble friend Lord Knight’s remarks and questions, and I share his excitement about the use of data and the benefits that it can bring to patients and their families I have received a briefing from the National AIDS Trust. I do not wish to delay the Bill but I think this briefing raises some important points about it. The National AIDS Trust agrees with the rest of us in strongly welcoming and supporting the Bill. Given that HIV stigma and discrimination are still prevalent in society, people living with HIV need to be assured that appropriate protections around confidentiality are in place when they access health and social care services. Indeed, the NDG herself has proved to be an invaluable source of expertise and advice when it comes to the health and social care system maintaining that essential balance between confidentiality and communication for this group The concern that the trust wants me to raise on its behalf is that in Clause 1 the Bill provides for a legal duty on relevant public bodies to have regard to guidance published by the NDG, "about the processing of adult health and social care data in England" In Clause 2, "Interpretation", "health and social care data" is defined. The NAT’s concern is that this definition of health and social care data could be interpreted to exclude non-clinical, demographic data that relates to an individual—for example, home address and family details—from the scope of the NDG’s guidance. Individuals do not distinguish between the kinds of information that they provide to health and social care services and, of course, expect all their information to be treated confidentially. Polling undertaken by NHS Digital recently found that the general public consider it as important that the NHS keeps their address confidential as their clinical information. I would be grateful if the Minister could give a clear assurance that the wording of the Bill, particularly at Clause 2(6), includes within the scope of health and social care data, and thus of the National Data Guardian’s guidance, all data, including non-clinical data, held on individuals by health and social care bodies. The National AIDS Trust talked about asking to have the Bill amended. That is almost certainly not necessary but I would like the assurance that it seeks. I would also like to be assured that the definition, and the clarity that is required in regulation, is there. This is one of those Bills where the regulations are going to be very important. I hope the Minister will be able to assure the House that, when the regulations are drafted, a proper consultation, including with Members here who have expressed an interest, takes place Finally, I entirely agree with the noble Baroness, Lady Kidron, about the value of NHS data. It is of value to patients and families, but it is also hugely valuable to organisations that want to exploit it and, if they do so, that should be for the benefit of the NHS, not for private benefit. I suspect that the Bill is not the place to solve that problem, but the noble Baroness was absolutely right to put that issue on the record. We had a very good debate a few weeks ago about precisely this matter, which a group of us wants to discuss with the Government on a cross-party basis: how we ensure that the nation as a whole benefits from the fantastic NHS database that we have in this country because our NHS has existed for so long. It should benefit not only us but the whole world. I also echo the noble Baroness’s question about PALS and children Noble Lords on these Benches absolutely support the Bill. We welcome it, we want it to speed through the House, and we look forward to the discussions that we probably need between now and its final stages.