Data (Use and Access) Bill [HL]

Debate between Baroness Kidron and Lord Kamall

Committee stage
Tuesday 10th December 2024 Grand Committee

[Baroness Kidron (CB)]

So is the noble Lord, Lord Clement-Jones. I withdrew my consent because I did not trust the system. I think that what both noble Lords have said about trust could be spread across the Bill as a whole.

We want to use our data well. We want it to benefit our public services. We want it to benefit UK plc and we want to make the world a better place, but not at the cost of individual data subjects and not at too great a cost. I add my voice to that. On the whole, I prefer systems that offer protections by design and default, as consent is a somewhat difficult concept. But, in as much as consent is a fundamental part of the current regulatory system and nothing in the Bill gets rid of it wholesale for some better system, it must be applied meaningfully. Amendments 79, 81 and 131 make clear what we mean by the term, ensure that the definition is consistent and clarify that it is not the intention of the Government to lessen the opportunity for meaningful consent. I, too, ask the Minister to confirm that it is not the Government’s intention to downgrade the concept of meaningful consent in the way that the noble Lord, Lord Stevenson, has set out.

[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.

--- Later in debate ---

[Baroness Kidron (CB)]

I am not suggesting that there is no legitimate interest for processing personal data without consent, but the legitimate interest assessment is a check and balance that ensures oversight and reduces the risk of overreach. It is a test, not a blocker, and does not in itself prevent processing if the balancing test determines that processing should go ahead. Amendment 85 illustrates this point in relation to vulnerable users. Given that a determination that a person is at risk would have far-reaching consequences for that person, the principles of fairness and accountability demand that those making the decision must follow a due process and that those subject to the decision are aware—if not in an emergency, certainly at some point in the proceedings.

In laying Amendment 86, the noble Lord, Lord Clement-Jones, raises an important question that I am keen to hear from Ministers on, namely, what is the Government’s plan for ensuring that a designation that an individual is vulnerable is monitored and removed when it is no longer appropriate? If a company or organisation has a legitimate interest in processing someone’s data considering the balancing interests of data subjects, it is free to do so. I ask the Minister again to give concrete examples of circumstances in which the current legitimate interest basis is insufficient, so that we understand the problem the Government are trying to solve.

At Second Reading, the Government’s curious defence of this new measure was the idea that organisations had concerns about whether they were doing the balancing test correctly, so the new measure is there to help, but perhaps the Minister can explain what benefits accrue from introducing the new measure that could not have been better achieved by the ICO providing more concrete guidance on the balancing test. Given that the measure is focused on the provision of public interest areas, such as national security and the detection of crime, how does the creation of the recognised legitimate interest help the majority of data controllers, rather than simply serving the interests of incumbents and/or government departments by removing an important check or balance?

Amendments 76, 83 and 90 seek to curb the power of the Secretary of State to override primary legislation and to modify key aspects of UK data protection law via statutory instrument. The proposed provisions in Clauses 70, 71 and 74 put one person in control, rather than Parliament. Elon Musk’s new role in the upcoming US Administration gives him legitimacy as an incoming officeholder in the Executive, but his new role is complicated by the fact that he is also CEO and majority shareholder of X. Like OpenAI, Google, Amazon, Palantir or any other tech behemoth, tech execs are not elected or bound to fulfil social goods or commitments, other than making a profit for their shareholders. They also fund many of the think tanks, reports and events in the political ecosystem, and there is a well-worn path of employment between industry, government and regulators.

No single person should be the carrier of that incredible burden. For now, Parliament is the only barrier in the increasingly confused picture of regulatory and political capture by the tech sector. We should fight to keep it that way.

[Lord Kamall (Con)]

My Lords, I support Amendment 74 from the noble Lords, Lord Scriven and Lord Clement-Jones, on excluding personal health data from being a recognised legitimate interest. I also support Amendment 78 on having a statement by the Secretary of State to recognise that legitimate interest and Amendments 83 and 90, which would remove powers from the Secretary of State to override primary legislation to modify data protection via an SI. There is not much to add to what I said on the previous group, so I will not repeat all the arguments made then. In simple terms, I repeat the necessity for trust—in health, particularly for patient trust. You do not gain trust simply by defining personal health data as a legitimate interest or by overriding primary legislation on the say-so of a Secretary of State, even if it is laid as a statutory instrument.