Data Protection and Digital Information Bill

Debate between Baroness Jones of Whitchurch and Lord Kamall

Committee stage
Wednesday 27th March 2024 Grand Committee

[Lord Kamall (Con)]

I apologise and thank the noble Lord for his collegiate approach.

[Baroness Jones of Whitchurch (Lab)]

My Lords, I thank all noble Lords who have contributed to this debate. We have had a major common theme, which is that any powers exercised by the Secretary of State in Clause 14 should be to enhance, rather than diminish, the protections for a data subject affected by automated decision-making. We have heard some stark and painful examples of the way in which this can go wrong if it is not properly regulated. As noble Lords have said, this seems to be regulation on automated decision-making by the backdoor, but with none of the protections and promises that have been made on this subject.

Our Amendment 59 goes back to our earlier debate about rights at work when automated decision-making is solely or partly in operation. It provides an essential underpinning of the Secretary of State’s powers. The Minister has argued that ADM is a new development and that it would be wrong to be too explicit about the rules that should apply as it becomes more commonplace, but our amendment cuts through those concerns by putting key principles in the Bill. They are timeless principles that should apply regardless of advances in the adoption of these new technologies. They address the many concerns raised by workers and their representatives, about how they might be disfranchised or exploited by machines, and put human contact at the heart of any new processes being developed. I hope that the Minister sees the sense of this amendment, which will provide considerable reassurance for the many people who fear the impact of ADM in their working lives.

I draw attention to my Amendments 58 and 73, which implement the recommendations of the Delegated Powers and Regulatory Reform Committee. In the Bill, the new Articles 22A to 22D enable the Secretary of State to make further provisions about safeguards when automated decision-making is in place. The current wording of new Article 22D makes it clear that regulations can be amended

“by adding or varying safeguards”.

The Delegated Powers Committee quotes the department saying that

“it does not include a power to remove safeguards provided in new Article 22C and therefore cannot be exercised to weaken the protections”

afforded to data subjects. The committee is not convinced that the department is right about this, and we agree with its analysis. Surely “vary” means that the safeguards can move in either direction—to improve or reduce protection.

The committee also flags up concerns that the Bill’s amendments to Sections 49 and 50 of the Data Protection Act make specific provision about the use of automated decision-making in the context of law enforcement processing. In this new clause, there is an equivalent wording, which is that the regulations may add or vary safeguards. Again, we agree with its concerns about the application of these powers to the Secretary of State. It is not enough to say that these powers are subject to the affirmative procedure because, as we know and have discussed, the limits on effective scrutiny of secondary legislation are manifest.

We have therefore tabled Amendments 58 and 73, which make it much clearer that the safeguards cannot be reduced by the Secretary of State. The noble Lord, Lord Clement-Jones, has a number of amendments with a similar intent, which is to ensure that the Secretary of State can add new safeguards but not remove them. I hope the Minister is able to commit to taking on board the recommendations of the Delegated Powers Committee in this respect.

The noble Baroness, Lady Kidron, once again made the powerful point that the Secretary of State’s powers to amend the Data Protection Act should not be used to reduce the hard-won standards and protections for children’s data. As she says, safeguards do not constitute a right, and having regard to the issues is a poor substitute for putting those rights back into the Bill. So I hope the Minister is able to provide some reassurance that the Bill will be amended to put these hard-won rights back into the Bill, where they belong.

I am sorry that the noble Lord, Lord Holmes, is not here. His amendment raises an important point about the need to build in the views of the Information Commissioner, which is a running theme throughout the Bill. He makes the point that we need to ensure, in addition, that a proper consultation of a range of stakeholders goes into the Secretary of State’s deliberations on safeguards. We agree that full consultation should be the hallmark of the powers that the Secretary of State is seeking, and I hope the Minister can commit to taking those amendments on board.

I echo the specific concerns of the noble Lord, Lord Clement-Jones, about the impact assessment and the supposed savings from changing the rules on subject access requests. This is not specifically an issue for today’s debate but, since it has been raised, I would like to know whether he is right that the savings are estimated to be 50% and not 1%, which the Minister suggested when we last debated this. I hope the Minister can clarify this discrepancy on the record, and I look forward to his response.

Health and Care Bill

Debate between Baroness Jones of Whitchurch and Lord Kamall

Committee stage
Wednesday 9th February 2022 Lords Chamber

[Baroness Jones of Whitchurch (Lab)]

My Lords, I intend to be brief because we do not believe that these two amendments are either necessary or appropriate in the context of the Health and Care Bill. If the Equality and Human Rights Commission is conducting a wider review into single-sex services then we should consider those issues at that time, but not in the context of this Bill.

I agree with the noble Baroness, Lady Brinton, that the Equality Act 2010 and the 2019 NHS guidance Delivering Same-Sex Accommodation already provide an effective mechanism for inclusion in the context of single-sex wards. The two amendments seek to cut across long-standing provisions in both the Act and the guidance. There is no substantial evidence to suggest that the status quo is not working and that NHS professionals are unable to use the existing guidance, which clearly sets out the principles and practice to be followed.

We also consider that the amendments could do harm if implemented, because they would create a blanket rule requiring trans women to be treated on men’s wards and trans men to be treated on women’s wards. At best, that would create an environment contrary to the dignity and well-being of the patients. At worst, it would leave trans patients at the risk of harm and abuse by outing them in a public context at a time when they are particularly vulnerable.

Like other noble Lords, we have received a detailed briefing from Stonewall imploring us to oppose these amendments. Given that we do not consider that the Bill is the right place for the consideration of these issues, we will not be lending our support to the amendments.

[Lord Kamall (Con)]

My Lords, I am grateful to my noble friend Lord Blencathra for bringing this discussion before the Committee and to my noble friend Lady Nicholson for taking the time to meet to discuss this issue, on which she is a strong advocate.

It clearly arouses strong feelings, but it is really important that we remember two principles: dignity and respect. There are people who feel they were born in the wrong body, and we should respect their rights as trans men or trans women; at the same time, there will be some women in wards who, on seeing someone who, to them, seems like a man, may feel slightly vulnerable at a particularly vulnerable time—in hospital. It is right that we get the right balance.

I hope noble Lords will be aware that NHS England is currently reviewing the Delivering Same-Sex Accommodation guidance to ensure that it remains focused on privacy, safety and dignity for all patients. The NHS is committed to meeting its duties under the Equality Act and, as such, needs to give due regard to both those whose gender identity is the same as their biological sex at birth and those whose gender identity is not. This means that the rights and needs of women and trans women are equal in law.

Following the review, the new content of the guidance will be informed by engagement with a wide range of stakeholders and by the statutory duties of the NHS outlined in the Equality Act 2010, including the public sector equality duty. NHS England is currently under- taking this review and is fully aware of its importance. The guidance, which will be updated if appropriate, is due to be published later this year. I call on noble Lords not to pre-empt the outcome of the guidance review. Any guidance will—indeed, must—be compatible with the requirements and duties placed on NHS bodies by the Equality Act 2010.

I am aware that concerns have been raised about the safety of women in single-sex wards. We, as a Government, believe that violence of any kind has no place in NHS facilities. We expect that hospital staff will act in the best interests of all patients and can, if necessary, call on security staff and law enforcement to ensure that everyone is safe. I repeat my request to my noble friend Lady Nicholson for evidence of such cases, whether it be women who feel uncomfortable or patients or staff who have raised concerns and been accused of being transphobic. If that is the case, I ask her to bring these cases to my attention and we can look at them further.

However, given that NHS England is currently reviewing the guidance, I hope noble Lords can appreciate the need to allow it time to review it in full. I ask the noble Baroness to withdraw her amendment.

--- Later in debate ---

[Baroness Jones of Whitchurch (Lab)]

My Lords, I will respond to the debate, but my comments apply equally to the next group, so I hope that the noble Baroness, Lady McIntosh, will forgive me if I do not respond to that group separately. We have heard some very thoughtful and persuasive contributions to the debate on these amendments this evening, and once again my noble friend Lord Hunt and the noble Lord, Lord Clement-Jones, have very eloquently led the charge. I congratulate them on their contributions and the constructive detail of their proposals. Issues such as this require some specific proposals to have any meaning and their amendments very much do that: they spell out some solutions to the challenges we face. I also welcome the specific proposal from the noble Baroness, Lady Tyler, who made the case well for a single identifier for children.

The underlying issues around the use of information collected by the NHS are not new. As we know and have heard, the NHS is almost unique in being a single player in this field, at least for some purposes. It can and often does lead the world in its ability to collect and aggregate patient data to drive improvement and for other non-profit-making purposes.

Since the organisational changes of the 1990s, data collection and use have been well developed, and information and analysis—for example, from the Secondary Uses Service and some GP sources—have been extensively used by academics and researchers, as well as operational managers, to huge public benefit. But we have struggled, as we have heard. Despite hugely expensive meanders into, for example, the National Programme for IT, we are far from the goal of integrated data sharing, even in a single hospital, let alone all hospitals, let alone for all care. Clearly, technical, legal and cultural barriers need to be overcome before we can maximise the use of all the data collected.

As noble Lords have pointed out, the groundswell of opposition to data collection and the related concerns about who gets to use it and for what purposes runs along these barriers. We know that the NHS often has dismal communications—for example, around CareCo and the recent changes to the use of GP data, which we have heard about this evening.

Although we do not own our data, there is a very powerful set of legal protections over what data can be collected and stored about us and what it can be used for. If the public had absolute confidence in the systems and usage rules, there would be far fewer objections to their information being used to drive improved healthcare, innovative drugs research or better preventive or public health information programmes. But the reality is that concerns are widespread—about data breaches, about NHS data reaching people who do not need to see it and, more recently, as we have heard, about data being used by a number of unethical organisations and private companies to drive profitability rather than for the improvement of public health.

Many patients would wish to be able to refuse to allow data collected about them to be used simply to drive a better marketing campaign for slimming or cosmetic aids but would allow their data to be aggregated so that better drugs could be developed and treatments improved to save lives; that would be an altogether different matter. Amendment 305A, in the name of my noble friend Lord Hunt, on establishing a sovereign health fund to invest in data-driven healthcare assets to generate long-term income for health and care makes that point, and I am sure it would have public support.

The key principle should be that all data collected for the purposes of care should be held and controlled by the public sector and its use protected. It should be subject to ethical guidelines and independently verified by an expert oversight group. These amendments would strengthen these rights in those regards.

Anyone who visited a hospital 20 years ago and walked around would probably have come across a trolley stacked with files that could easily have been removed or read. However, IT and the ability to aggregate vast amounts of data, allowing serious data breaches, is a modern and valid concern. My noble friend Lord Davies illustrated this with specific concerns about smart programmes which can identify individual people from a very small amount of data about their lives.

So we do feel that these amendments would be a very helpful way to address the underlying and fundamental problems of the lack of patient and public confidence in how their data is going to be used and shared. I hope the Minister, the noble Baroness—no, it is the noble Lord—agrees that these proposals offer a helpful way forward in addressing these concerns. While we will not press the amendments to a vote this evening, I hope he is able to offer some reassurance that some of these practical proposals will be taken forward by the Government.

[Lord Kamall (Con)]

Let me assure the noble Baroness that I was not trying to opt out of my duty to respond.

I thank all noble Lords for their contributions to this important debate. I reassure many noble Lords across the House that when I first became a Minister, I had many of these questions myself—and I continue to have them, if I am perfectly honest.

I will turn first to the amendments before deciding how to go forward, as it were. In response to Amendment 298, Clause 81 explicitly mentions NHS England as a body to which mandatory information standards can be applied. As set out in this clause, the exact procedure for publishing information standards, as well as any procedure for granting waivers in respect of compliance with these standards, will be set out in regulations subject to parliamentary scrutiny under the affirmative procedure. The regulations may set out limits on the circumstances in which a waiver may be granted. For example, a temporary waiver might be considered where an organisation does not have funding in place to implement the required changes.

The noble Lord, Lord Hunt, also referred to accredited data access environments and rightly acknowledges that their function is not just to support research but for analysis to support service planning, as well as other essential activity. I believe that we are fulfilling our promises to the profession and the public at the moment, but clearly more could be done. We have made clear that data collection for General Practice Data for Planning and Research will now begin only when: first, we have in place the ability to delete data if patients choose to opt out of sharing their GP data with NHS Digital; secondly, a trusted research environment is available, where approved researchers can work securely on deidentified patient data; and, lastly, a campaign of engagement and communication has increased public awareness, explaining how data is used and patient choices.

In addition, the Government have committed to developing, this year, rules for such data environments in the NHS, including technical specifications and a framework for accreditation. However, while we expect secure data environments to be appropriate for the vast majority of uses, there are likely to be exceptions. For example, where patient consent has been given for data to be made available to an external researcher or organisation, or where there is a court order requiring data, it may have to leave the secure data environment. I assure the noble Lord that we will continue to examine how secure data environments operate and are governed, to make sure that they are fit for the future.