Data (Use and Access) Bill [HL]

Debate between Lord Holmes of Richmond and Lord Kamall

Committee stage
Tuesday 10th December 2024 Grand Committee

[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?