(1 week, 5 days ago)
Grand CommitteeMy 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.
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?
(2 years, 2 months ago)
Lords ChamberWe have built on the legacy of the London 2012 Olympic and Paralympic Games by hosting a number of major sporting events, including this year’s Birmingham Commonwealth Games, the UEFA Women’s Euros and the forthcoming integrated Rugby League World Cups. We have also seen a number of initiatives in grass-roots sport. We are very proud to have a world-leading sports sector, and the Queen Elizabeth Olympic Park attracts over 6 million visitors a year, creating thousands of jobs and homes.
My Lords, the Lionesses this summer and the Birmingham Commonwealth Games demonstrate the continuing sporting legacy from London 2012. Does my noble friend agree that there are also continuing economic, social and cultural benefits? In his new role—I welcome him to the Front Bench for DCMS—will he spearhead the initiative from his department to ensure that, for the next decade, we continue to reap all the benefits of that golden summer of sport in 2012?
I thank my noble friend for that warm welcome. Indeed, if noble Lords will allow me, I also thank the Labour Front Bench and others for welcoming me to my new post. I look forward to working constructively with noble Lords across the House. On my noble friend’s question, he is absolutely right that it is important not only that we continue to see the social, economic and cultural benefits of hosting these events but that we learn from these events. For example, from the things that we learned from London 2012, when it came to the Commonwealth Games, we asked whether we always need brand-new facilities or whether we could upgrade existing facilities that would definitely be used by the community in the future. There are a number of lessons that we learn from each of these events.