Data (Use and Access) Bill [HL]

Lord Holmes of Richmond Excerpts

Committee stage
Tuesday 10th December 2024 Grand Committee

[Lord Stevenson of Balmacara (Lab)]

My Lords, I have in subsequent groups a number of amendments that touch on many of the issues that are raised here, so I will not detain the Committee by going through them at this stage and repeating them later. However, I feel that, although the Government have had the best intentions in bringing forward a set of proposals in this area that were to update and to bring together rather conflicting and difficult pieces of legislation that have been left because of the Brexit arrangements, they have managed to open up a gap between where we want to be and where we will be if the Bill goes forward in its present form. I say that in relation to AI, which is a subject requiring a lot more attention and a lot more detail than we have before us. I doubt very much whether the Government will have the appetite for dealing with that in time for this Bill, but I hope that at the very least—it would be a minor concession at this stage—they will commit at the Dispatch Box to seeking to resolve these issues in the legislation within a very short period because, as we have heard from the arguments made today, it is desperately needed.

More importantly, if, by bringing together documentation that is thought to represent the current situation, either inadvertently or otherwise, the Government have managed to open up a loophole that will devalue the way in which we currently treat personal data—I will come on to this when I get to my groups in relation to the NHS in particular—that would be a grievous situation. I hope that, going forward, the points that have been made here can be accommodated in a statement that will resolve them, because they need to be resolved.

[Lord Holmes of Richmond (Con)]

My Lords, it is a pleasure to take part in today’s Committee proceedings. In doing so, I declare my technology interests as set out in the register, not least as adviser to Socially Recruited, an AI business.

I support the noble Viscount, Lord Colville, in his amendments and all the other amendments in this group. They were understandably popular, to the extent that when I got my pen out, there was no space left for me to co-sign them, so I was left with the oral tradition in which to reflect my support for them. Before going into the detail, I just say that we have had three data Bills in just over three years: DPDI, DISD and this Bill. Over that period, though the names have changed, much of the meat remains the same in the legislation. Yet, in that period, everything and nothing haschanged —everything in terms of what has happened with generative AI.

Considering that seismic shift that has occurred over these three Bills, could the Minister say what in this Bill specifically has changed, not least in this part, to reflect that seismic change? Regarding “nothing has changed”, nothing has changed in terms of the incredibly powerful potential of AI for positive or negative outcomes, ably demonstrated with this set of amendments.

If you went on to Main Street and polled the public, I believe that you would get a pretty clear understanding of what they considered scientific research to be. You know it. You understand why we would want to have a specified definition of scientific research and what that would mean for the researchers and for the country.

However, if we are to draw that definition as broadly as it currently is in the Bill, why would we bother to have such a definition at all? If the Government’s intention is to enable so much to come within the perimeter, let us not have the definition at all and let us allow to continue what is happening right now, not least in the reuse of scrape data or in how data is being treated in these generative AI models.

We have seen what has happened in terms of the training, but when you look at what could be called development and improvement, as the noble Viscount has rightly pointed out, all this and more could easily fit within the scientific research definition. It could even more easily fit in when lawyers are deployed to ensure that that is so. I know we are going to come on to rehearsing a number of these subjects in the next group but, for this group, I support all the amendments as set out.

I ask the Minister these two questions. First, what has changed in all the provisions that have gone through all these three iterations of the data Bill? Secondly, what is the Government’s intention when it comes to scientific research, if it is not truly to mean scientific research, if it is not to have ethics committee involvement and if it is not to feel sound and be defined as what most people on Main Street would recognise as scientific research?

[Lord Markham (Con)]

I start by apologising because, due to a prior commitment, I am not able to stay for many of the proceedings today, but I see these groupings and others as critical. In the few words that I will say, I hope to bring to bear to this area some of my experience as a Health Minister, particularly in charge of technology and development of AI.

I can see a lot of good intent behind these clauses, to make sure that we do not stop a lot of the research that we need. I was recently very much involved in the negotiation of the pandemic accord regarding the next pandemic and how you make sure that any vaccines that you develop on a worldwide basis can be distributed on a worldwide basis as well. One of the main stumbling blocks was that the so-called poorer countries were trying to demand, as part of that, the intellectual property to be able to develop the vaccines in their own countries.

The point we were trying to make was that, although we could see the good intentions behind that, it would have a real chilling effect on pharmaceutical companies investing the hundreds of millions or even billions of pounds, which you often need with vaccines, to find a cure, because if they felt that they were going to lose their intellectual property and rights at the end, it would be much harder for them to justify the investment up front.

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[The Deputy Chairman of Committees (Baroness McIntosh of Hudnall) (Lab)]

I advise the Committee that, if this amendment is agreed, I cannot call Amendment 61 by reason of pre-emption.

[Lord Holmes of Richmond (Con)]

My Lords, it is a pleasure to take part in the debate on these amendments. I very much support Amendment 60 as introduced. I was delighted to hear the Minister tell the Grand Committee that the Government are coming forward with an AI Bill. I wonder if I might tempt her into sharing a bit more detail with your Lordships on when we might see that Bill or indeed the consultation. Will it be before Santa or sometime after his welcome appearance later this month?

We touched on a number of areas related to Amendment 65A in the previous group. This demonstrates the importance of and concern about Clause 67, as so many amendments pertain to it. I ask the Minister whether a large language model that comes up with medically significant conclusions but, prior to that, gained a considerable amount of that data from scraping, would be fine within Clause 67 as drafted.

Similarly, there are overriding and broader reuse possibilities from the drafting as set out. Again, as has already been debated, scientific research has a clear meaning in many respects. That clarity very much comes when you add public interest and ethics. Could a model that has taken vast quantities of others’ data without consent and—nodding more towards Amendment 60 —without remuneration and consent still potentially fit within the definition of “scientific research”?

In many ways, we are debating these points around data in the context of scientific research, but we could go to the very nub or essence of the issue. All that noble Lords are asking, in their many eloquent and excellent ways, is whose data is it, to what purpose is it being put and have those data owners been consented, respected and, where appropriate—particularly when it comes to IP and copyrighted data—remunerated? This is an excellent opportunity to expand on the earlier debate on Clause 67. I look forward to the Minister’s response.

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[Lord Kamall (Con)]

My Lords, I support Amendment 71 and others in this group from the noble Lords, Lord Clement-Jones and Lord Stevenson. I apologise for not being able to speak at Second Reading. The noble Lord, Lord Clement-Jones, will remember that we took a deep interest in this issue when I was a Health Minister and the conversations that we had.

I had a concern at the time. We all know that the NHS needs to be digitised and that relevant health professionals need to be able to access relevant data when they need to, so that there is no need to be stuck with one doctor when you go to another part of the country. There are so many efficiencies that we could have in the system, as long as they are accessed by relevant and appropriate health professionals at the right time. But it is also important that patients have confidence in the system and that their personal data cannot be shared with commercial organisations without them knowing. As other noble Lords have said, this is an issue of trust.

For that reason, when I was in that position, I reached out to civil liberties organisations to understand their concerns. For example, medConfidential was very helpful and had conversations with DHSC and NHS officials. In fact, after those conversations, officials told me that its demands were reasonable and that some of the things being asked for were not that difficult to give and common sense.

I asked a Written Question of the noble Baroness’s ministerial colleague, the noble Baroness, Lady Merron, about whether patients will be informed of who has had access to their patient record, because that is important for confidence. The Answer I got back was that the Government were proposing a single unified health record. We all know that. She said that:

“Ensuring that patients’ confidential information remains protected and is seen only by those who need to see it will be a priority. Public engagement next month will help us understand what safeguards patients would want to see”.


Surely the fact that patients have opted out shows that they already have concerns and have raised them.

The NHS can build the best data system—or the federated data platform, as it is called—but without patient confidence it is simply a castle made of sand. As one of my heroes, Jimi Hendrix, once said, castles made of sand fall into the sea eventually. We do not want to see that with the federated data platform. We want to see a modernised system of healthcare digital records, allowing joined-up thinking on health and care right across a patient’s life. We should be able to use machine learning to analyse those valuable datasets to improve preventive care. But, for that to happen, the key has to be trust and patients being confident that their data is secure and used in the appropriate way. I look forward to the Minister’s response.

[Lord Holmes of Richmond (Con)]

My Lords, I support these amendments in the names of the noble Lords, Lord Stevenson and Lord Clement-Jones. It is a pleasure to follow the second ex-Health Minister this afternoon. In many ways, the arguments are just the same for health data as they are for all data. It is just that, understandably, it is at the sharpest end of this debate. Probably the most important point for everybody to realise, although it is espoused so often, is that there is no such thing as NHS data. It is a collection of the data of every citizen in this country, and it matters. Public trust matters significantly for all data but for health data in particular, because it goes so close to our identity—our very being.

Yet we know how to do public trust in this country. We know how to engage and have had significant success in public engagement decades ago. What we could do now with human-led technology-supported public engagement could be on such a positive and transformational scale. But, so far, there has been so little on this front. Let us not talk of NHS data; let us always come back to the fundamental principle encapsulated in this group of amendments and across so many of our discussions on the Bill. Does the Minister agree that it is about not NHS data but our data—our decisions—and, through that, if we get it right, our human-led digital futures?

[Viscount Camrose (Con)]

Many thanks to all noble Lords who have proposed and supported these amendments. I will speak to just a few of them.

Amendment 70 looks to mitigate the lowering of the consent threshold for scientific research. As I have set out on previous groups, I too have concerns about that consent threshold. However, for me the issue is more with the definition of scientific research than with the consent threshold, so I am not yet confident that the amendment is the right way to achieve those desirable aims.

Amendment 71 would require that no NHS personal data can be made available for scientific research without the explicit consent of the patient. I thank the noble Lords, Lord Stevenson of Balmacara and Lord Clement-Jones, for raising this because it is such an important matter. While we will discuss this under other levels, as the noble Baroness, Lady Kidron, points out, it is such an important thing and we need to get it right.

I regret to advise my noble friend Lord Holmes that I was going to start my next sentence with the words “Our NHS data”, but I will not. The data previously referred to is a very significant and globally unique national asset, comprising many decades of population-wide, cradle-to-grave medical data. No equivalent at anything like the same scale or richness exists anywhere, which makes it incredibly valuable. I thank my noble friend Lord Kamall for stressing this point with, as ever, the help of Jimi Hendrix.

However, that data is valuable only to the extent that it can be safely exploited for research and development purposes. The data can collectively help us develop new medicines or improve the administration and productivity of the NHS, but we need to allow it to do so properly. I am concerned that this amendment, if enacted, would create too high an operational and administrative barrier to the safe exploitation of this data. I have no interest in compromising on the safety, but we have to find a more efficient and effective way of doing it.

Amendments 79, 81 and 131 all look to clarify that the definition of consent to be used is in line with the definition in Article 4.11 of the UK GDPR:

“‘consent’ of the data subject means any freely given, specific, informed and unambiguous indication of the data subject’s wishes by which he or she, by a statement or by a clear affirmative action, signifies agreement to the processing of personal data relating to him or her”.

This amendment would continue the use of a definition that is well understood. However, paragraph 3(a) of new Article 8A appears sufficient, in that the purpose for which a data subject consents is “specified, explicit and legitimate”.

Finally, with respect to Clause 77 stand part, I take the point and believe that we will be spending a lot of time on these matters going forward. But, on balance and for the time being, I feel that this clause needs to remain, as there must be clear rules on what information should be provided to data subjects. We should leave it in for now, although we will no doubt be looking to polish it considerably.