The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)

My Lords, I congratulate the noble Lord, Lord Patel, on securing this debate and on his acknowledgement of the importance of patient data to research and of what the Government have done to date. I also thank noble Lords for their very thoughtful and informed contributions. I very much understand the point about trust, which has been made several times. We will come back to that, but I want to assure all noble Lords of the understanding that it is not always whether people have distrust because of something factual; if they feel distrustful, that in itself is a challenge for us. We have some of the richest health data in the world, thanks to our diverse population and because we have an NHS that has supported and cared for us for some 78 years; we are fortunate indeed. It is the case that patient data drives life-saving discoveries. The noble Baroness, Lady Brinton, spoke very personally to that point, and I know many noble Lords could also draw on their personal experience to do so. It helps us to understand disease and to develop new treatments, many of which we could never have dreamed of. This is also essential to improving the nation’s health and prosperity; it is key to our life sciences sector, and to creating jobs, driving investment and powering innovation. Ensuring that benefits flow back to patients and the public, as the noble Lord, Lord Patel, asked for, is also, I agree, essential. That is why we have published a value-sharing framework for NHS data, and also why we will charge organisations for access. I can assure my noble friend Lord Davies, who asked about an oversight body, that the confidentiality advisory group is the independent oversight body; I feel that is probably what he seeks. It decides whether confidential patient data can be used for research without individual consent. As many noble Lords have acknowledged, we all know that people do want their patient data to be used for research, but I completely agree that this trust is conditional on our keeping the data secure and making that known. We are committed to moving from a system of data sharing, in which copies of people’s data are sent to researchers, to a system of data access by default, using secure data environments. The noble Lord, Lord Patel, spoke to this very point. Perhaps I can give some further outline and further reassurances and pick up a number of the questions. On any key questions that I cannot answer because of time, I will be glad to write to noble Lords. The noble Lord, Lord Patel, said that NHS England now uses secure data environments—SDEs—as the default route for accessing data for research. Its network brings together around 300 local and regional datasets that were not available previously. The Health Data Research Service—HDRS—will build on that foundation by developing a much clearer route into the system and more consistent processes. That is important more broadly because, although investment in secure data environments had begun previously, and services were being established, we are now taking the system from where it was—as has been said, it was somewhat fragmented—to a coherent approach. I can say to your Lordships’ House that a simpler, safer and more accountable set-up is where we will get to by the end of this Parliament. In answer to the point raised by the noble Lords, Lord Patel and Lord Weir, last year we commenced powers to allow us to mandate information standards and to create binding rules across both GPs and trusts. Yes, there is more work to do, but I think that sets us absolutely in the right place. There are some examples of very good practice. We can look to Greater Manchester, where they have linked GP and hospital data. This is not commonplace, because it is GPs who currently decide, on a practice-by-practice basis, how their patient data are used. We are currently running a programme of national engagement with GPs on the use of patient data, and we will use that to work with GPs and other primary care professionals to improve the use of GP data in the future. Our new guidance on enabling safe access to UK human genomic data demonstrates that we expect human genomic data to be accessed through secure data environments—and, I would emphasise, only by approved researchers. I agree with my noble friend Lady Gill that we have to act swiftly and robustly where things go wrong. Of course, we minimise that possibility, but we have to be realistic. I am grateful to the noble Lord, Lord Tarassenko, for setting out the facts on Biobank, to which my noble friend Lord Davies also referred. I will not repeat the points he made, because I share his analysis. On the federated data platform, I say to the noble Baroness, Lady Bennett, that it is not used for research; it supports NHS operations and direct care. This means that opting out of sharing your health data for research and planning will not stop your data being used by the FDP to support your care. That is an important reassurance to those who wish to opt out of sharing their health data. As I mentioned, the FDP contract will be reviewed ahead of the February 2027 break clause. I say to the noble Baroness, Lady Freeman, that the issue of gaining and maintaining trust is key. That means giving people meaningful choices over their data. So, following public engagement, we are reforming how people can opt out of having their data used for planning and research, and making it clearer and simpler, so that they do not feel bound should they not wish to participate. As noble Lords have said, it is true that people generally support the use of patient data when they understand who is using it, why it is being used and for what purpose. I accept that awareness remains low, so we have to be transparent about its purpose, as well as maintain strong safeguards and involve the public in decision-making. On the safeguards about which I have spoken, we want to make it easier for legitimate researchers to access data. The Sudlow review described just how long it can take for approved researchers to access health data. That is an issue. So, through the NIHR, we are investing around £1.7 million a year in research and research infrastructure. Alongside that, the NHS data and analytics academy is developing the workforce of data engineers, analysts and other specialists we need, as per the point of the noble Lord, Lord Patel, in order to turn this into better treatments and care. Our NIHR reforms mean that clinical trials are being set up some 47 days faster than last year. But we want to go further and faster, which is why we have established the HDRS. I say to the noble Baroness, Lady Murphy, that the question of dementia research will indeed be one for the HDRS. The noble Lord, Lord Mair, asked about HDRS. Processes will indeed be streamlined. On the matter of funding, I say to him that the future funding model is to be developed and we certainly will take into account the patients and the public. I am sure that is something we will want to develop further. This has been a helpful debate. We are moving towards a coherent strategy. A number of other questions were raised, including from the noble Lord, Lord Kamall, and others, and I will be glad to follow up on those. For now, I hope this will take us forward and that we can all move to using patient data to better manage how we provide our health services.