Patient Data: Research
Thursday, 10 September 2026
Contributions
Question for Short Debate
Asked by
Lord Patel
To ask His Majesty’s Government what assessment they have made of the use of patient data for research.
Lord Patel (CB)
My Lords, after listening to the last debate, I am tempted to speak only about how health research data might help economic growth to alleviate all the debt that we were talking about, but I will not. I thank the noble Baroness, Lady Merron, for taking this debate and ,all noble Lords who signed up to take part, despite the brief time for which they are allowed to speak. I also thank the Library for its excellent brief and POST for the publication of its report on the subject of health data research. I fully support the Government’s initiative to strengthen the collection and use of health data for research but I hope that the commitment from the Government will be longer term and that they will be prepared to do whatever is necessary to make the UK a world leader in health data research. The use of health data to improve healthcare is not new. In the 14th century, plague killed one-third of the population because they did not have the ability to use data and track the epidemic. By 1854, however, John Snow tracked the cholera outbreak in Soho and controlled the spread of the disease. There are many examples of the use of data and epidemiological studies leading to improvements in healthcare, such as the association made in 1954 between smoking and lung cancer and chronic lung disease and, later, the association between HPV and cervical cancer. Most recently and quite importantly, the UK Cystic Fibrosis Registry, kept by the Cystic Fibrosis Trust, identified genetic mutations that occur in some children and adults who suffer from cystic fibrosis, and identified an effective drug that improves their ventilatory function. The advent of AI and machine learning, genomics and pharmacogenomics, and the linking of such data through machine learning and imaging technology will transform the research using health data for better healthcare and innovations. Better data means fewer deaths. A strong, efficient health data platform that can be accessed for research is crucial for the success of the life sciences strategy and for economic growth. Currently, the life sciences sector has a turnover of £146.9 billion and employs over 360,000 people. Apart from delivering better healthcare, health data research is the fuel that will accelerate that by adding more than £10 billion annually in value added growth. The UK’s strands for health data curation have the ability to track longitudinal data from a diverse population of 63 million, but the current system is fragmented and scattered across thousands of GP practices, hospital trusts, community health clinics and others that deliver healthcare. However, the UK health data environment is changing from a siloed system to a national framework. One hopes that the active phasing-out of data sharing, which often led to data breaches, will now stop that from happening. Data sharing will be replaced with the secure data environment, SDE, and the data stay-put model, where the data will stay on one platform and not be shared but rather acted upon. Researchers will be allowed to access only that data, and it will not be exported. The Five Safes model for data access and outputs will make the data secure. The launch of the HDRS, the Health Data Research Service, which is backed by £600 million of Government investment, keeps the promise going. That is all very good, but the verdict is that, while it is a great blueprint, delivery is the test. We have good plans, but let us hope that delivery will follow. What are the challenges? Currently, regional secure data environments operate in silos in over 180 trusts. Often, they are written and uncoded, which means that using them is difficult. They are diverse, handwritten and uncoded, and they occur in 180 trusts and thousands of GP practices, and are therefore not connected. Data is currently written and collected in different hospitals and general practices but is not unified in any data models. The governance to access data for research is multi-layered, causing bottlenecks. One has to answer to so many different regulators just to be allowed to use the data. If the UK is to become a leader in clinical trials, health data needs to be coded and easily available in every hospital. To maintain public trust, there need to be clear, transparent, and legally binding arrangements as to how data can be accessed and used for the pharma and tech industries, and how the NHS will benefit from the benefits that accrue, both in healthcare improvement and money. I personally approve of the opt-out model rather than the opt-in model, because the latter will not work for health data research. What are the consequences of not addressing these challenges? If we do not address them, it will affect the NHS; it will affect patients, because they will not receive modern care; and it will affect the UK economy. I therefore have four key questions for the Minister. First, what specific legal mandate will be needed for longitudinal data streams that link GP and hospital data? Secondly, what effective plans will be put in place to end the fragmented secure data environment? Thirdly, on public trust, will the Government legislate that any benefits from the use of and access to NHS data by commercial companies flow back to the NHS? Fourthly, are there plans for trusts to have a workforce, such as data engineers, to clean up the data and produce the appropriate codes that will be used by AI and machine learning to national standards and, if so, how will they be funded? I look forward to the Minister’s answers.
Baroness Nargund (Lab)
My Lords, it is a great pleasure to follow the noble Lord, Lord Patel. I congratulate him on securing this very important debate and on his insightful and excellent introductory speech. The National Health Service is one of Britain’s greatest institutions. After 30 years as a front-line NHS consultant in women’s health, I believe it can be more than a healthcare provider. The NHS holds the richest longitudinal health dataset in the world. It can help to improve outcomes, accelerate innovation, create intellectual property, patents and high-value jobs, and attract global investment. The new Health Data Research Service presents a significant opportunity. Our ambition should go further, to create the high-quality representative datasets needed to develop and validate AI safely. AI can analyse data at a large scale in a way that humans cannot, predicting risk, promoting early detection, accelerating drug discovery and clinical trials, and enabling the much-needed shift from treatment to prevention. However, AI is only as good and equitable as the data it is trained on. We need richer data points—not simply age and sex, but ethnicity, disability, socio-economic deprivation, postcode and wider determinants of health—to identify who is missing out and why, why outcomes differ and how to address them. Diseases do not care about borders, and nor should any medical research. The UK should ensure regulatory interoperability with international standards and lead global research with our data. This is essential in particular for rare diseases and cancers, and for ethnic minority communities who are underrepresented in research. Public trust must be the foundation. Patient consent, privacy, security, transparency and appropriate safeguards must be embedded from the outset. If the challenges my noble friend Lord Patel described are addressed, the NHS patient database can become a powerhouse for health research and AI-driven innovation, and economic growth. Can the Minister say whether the Government will ensure that the Health Data Research Service develops representative datasets for AI research and also pursue international data interoperability, so that Britain can lead in equitable and rare diseases innovation, while driving economic growth? Good patient data can drive good medical research and help deliver good health and good growth together.
Baroness Bennett of Manor Castle (GP)
My Lords, I thank the noble Lord, Lord Patel, for securing this debate. I declare something of an interest, in that I am just back from the ninth World One Health Congress in Lisbon, partially supported by DSAC. I go to the UKRI to start with the basic fact that the social determinants of health determine up to 80% of health outcomes, with clinical care accounting for only 20%. We must not lose sight of this reality, particularly given that healthy life expectancy is down two years in the past decade. We do not need data to know that poverty, inequality and austerity have enormous health costs. Data collection does not really add to our understanding of a reality that includes the impacts of financial insecurity, poor housing, filthy air and discrimination. The noble Lord, Lord Patel, spoke about economic growth having an impact on health. I would argue that we need a major redistribution of the resources in our society to tackle those things. Waving the magic wand of AI and saying we will fix it with that just does not satisfy. However, when we come to health data, and there is no doubt it is extremely important and useful, we have a huge problem of trust: patients trusting the system and trusting the Government to govern if their data is handed over. If there are no transparent controls, patients are not going to allow it. I note that the Government themselves, in a letter to the chair of the Commons health committee, acknowledged that, in recent times, tens of thousands of patients have withdrawn their data from use in research projects, with very many of them expressing concern about the involvement of the US defence and health tech company Palantir. There really is no wonder about that. We need to think about this. Peter Thiel and Alex Karp have said some very disturbing things, but I also go to Palantir’s UK head of operations, Louis Mosley, at last year’s Alliance for Responsible Citizenship. He said Western civilisation was in an existential battle against the “armies of fact-checkers and experts”, lawyers, academics and journalists. Palantir is supposed to be supplying unbiased, fact-based data analysis for the NHS: this is the company that we are talking about. We know that it had very little track record in health data before it enlisted the aid of the company of the former Member of this House, Lord Mandelson—Global Counsel—and secured this contract. The Government have a really important decision to make on health data and whether they continue with this contract. We must not allow ourselves to be trapped into using these companies. Also, as the noble Lord, Lord Bridges of Headley, referred to in the last debate, we have to ask questions about their financial stability; if we rely on them and they are not financially stable, that is another issue as well.
Lord Tarassenko (CB)
My Lords, I am very grateful to my noble friend Lord Patel for securing this timely debate, in which I only have time to speak about UK Biobank. I declare an interest, as I have been not only a participant since 2007 but also a co-investigator in a research study analysing UK Biobank data to develop AI algorithms for the early detection of atrial fibrillation. Ahead of this debate, there have been some very biased, negative briefings about UK Biobank—a not-for-profit charity—with multiple claims backed by no evidence whatever. UK Biobank is a visionary project in modern science, admired the world over. It has assembled a unique dataset from 500,000 UK volunteers. Over 22,000 scientists have been approved to analyse the data, contributing to 18,000 peer-reviewed papers. Now, we all know that access to UK Biobank data was offered for a very short period in April on a Chinese e-commerce website. There was swift action to deal with the data breach and the advice from China was that there had been no sales of data. Since mid-2024, Biobank has been making a transition to its data being available only within a trusted research environment, a TRE, with an airlock. The data from UK Biobank does not contain any personally identifying information. It is de-identified. No participant has ever been re-identified without their active co-operation. All participants were informed of the data breach in China and given the opportunity to ask for their data to be removed. The number of those who did so is staggering: 344 out of 500,000 participants, less than 0.1% of the total number of participants. This voter confidence, I believe, stems not only from the altruism of the participants but from the awareness that UK Biobank has already enabled new diagnostics and treatments that are saving thousands of lives: for example, through polygenic risk scores being added to heart disease risk measurement, through non-invasive diagnosis of fatty liver disease and through near real-time automated cardiac MRI analysis. The current UK Biobank model for patient data research could be scaled up as a result of the introduction of the single patient record. I hope that the Minister will be able to confirm that the NHS Modernisation Bill will make this possible.
Lord Davies of Brixton (Lab)
My Lords, I very much thank the noble Lord, Lord Patel, for introducing this debate. I very much agree with the points he made and I hope the answers will be forthcoming. Clearly, I support the use of patient data for research; the benefits from medical innovation, prevention and treatment are substantial. But I want to focus on a narrower issue: the gap between what we know about public opinion and how policy responds to it. The evidence consistently shows strong public support for the use of health data in research, yet the same evidence also shows continued concern about how data is handled and, in particular, the role of private companies in accessing and using that data. These concerns are acknowledged in many reports but are too often treated as secondary. This is especially important for mental health data. Research indicates that willingness to share mental health information remains high and differs only marginally from willingness to share physical health data. However, trust is critical. People’s confidence depends not simply on whether data is used but on who is using it and for what purpose. For those with stigmatised conditions, the consequences of any misuse or breach can be profound. Recent events have demonstrated that public confidence cannot be taken for granted. I was not going to mention UK Biobank, but since it has been mentioned, I hear the defence clearly. I am a fan of it and a participant in it, but that case illustrates the problems we face, because once trust is lost participation may decline, undermining the very research that depends on public co-operation. I therefore ask the Minister two questions. First, will the Government consider establishing a standing oversight body with substantial patient representation to review access to particularly sensitive categories of data, not least on mental health, and to publish the reasons for its decisions? Secondly, where commercial organisations benefit from access to NHS data, what steps will the Government take to ensure that the knowledge gained is returned to the NHS and to patients?
Lord Mair (CB)
My Lords, this House’s Science and Technology Committee, which I chair, has been investigating innovation in the NHS, including the use of patient data for research. We expect to produce our report in the next few months. There is no question that the UK has unique and exceptionally rich health data. Better use of it would save lives, benefit the NHS and grow the economy. However, enabling access to this data for research has been a long-term policy problem. Professor Cathie Sudlow’s review warned that access is in danger of going backwards since the pandemic. The £600 million Health Data Research Service, the HDRS, is intended to help address this. It has the potential to be transformative, but there are two key areas of concern: funding and public trust. First, on funding, after its initial five-year budget period the Government have set a target for the HDRS to be self-funding through commercial partnerships. But since there is not yet clarity around which services it will offer, what its expenditures will be and what prices it will charge, we cannot assess whether this is realistic. High access fees on existing health data research projects already lock out life sciences SMEs and could push researchers overseas, where they could access health data more easily. The self-funding model risks the HDRS ending up dependent on large pharmaceutical companies just to maintain its operations. Could the Minister explain how and why the department decided that the HDRS should be self-funding, and will she publish the analysis behind that? Secondly, there is the question of public trust. Its importance has already been referred to by my noble friend Lord Patel in his excellent opening speech and by other noble Lords. There is a long list of well-meaning policy initiatives to enable access to patient data, including care.data and the GPDPR, which were undermined by a loss of public trust. Public support for using health data for research is real but conditional—it is undoubtedly weaker when it comes to commercial uses. Trust cannot be assumed. It has to be earned through transparency, clarity about how data is used and visible, tangible benefits to patients. Can the Minister tell us how the HDRS will become a trusted data custodian? What safeguards will it use for patient data and how is it going to engage with the public? I hope the Minister will tell us how the HDRS will address these important issues about funding and public trust. It is vital to ensure that we can realise the immense opportunity offered by full use of patient health data.
Lord Weir of Ballyholme (DUP)
My Lords, I join others in thanking the noble Lord, Lord Patel, for securing this debate. Across a range of medical conditions, we are hopefully on the brink of medical advances, underpinned by robust research, which have the opportunity to save lives or transform them for the better. With the structure of the National Health Service, we have a unique asset which puts us in a much better position than most other countries across the globe. Data can be of major benefit when it is collated correctly by government, its quality is uniform in nature and it is used effectively. I will give an example from outside the health service. During the pandemic, in Northern Ireland we had a single education authority which held all data for every person in Northern Ireland on free school meals and the uniform grant. That meant that, when support needed to be given to families in need, we could identify them straightaway. About 98% of families could be helped from the very start, which contrasted with most areas of Great Britain, where the data was quite often of a different nature and fragmented between different local authorities. I think that the Government’s response to the Sudlow review, in terms of the HDRS, is the right way forward, but there are four conditions which are critical to implementation. First, it is about not simply the quantity but the quality of data, particularly as most health data tends to be qualitative in nature. As has been highlighted, it is critical that data is codified, but must also be coded in a consistent way, and that we have linkages between datasets. Secondly, it is critical that we provide clarity and certainty for medical companies and researchers on what can be available. We need to ensure that data is research ready and that companies know what data they are getting, what the cost will be to them and how long they can have that data. That will enable them to plan research for the future. Thirdly, as has been highlighted, public trust is critical. One of the main barriers whenever the Government looked at some form of national identity was public concern over how their data would be used and whether it would be secure. Particularly now with malevolent foreign states and criminal gangs, we know that there is a risk of data breaches and data capture, so we need to ensure that what is put in place is secure from the start. Finally, it is important that we are comprehensive in our approach to geography and subject matter. We need to ensure that, for example, if we are going to integrate social care, that is factored into data provision, and that we have systems which take account not simply of NHS England but of services across the UK, involving all the devolved institutions working together to provide that data.
Baroness Finlay of Llandaff (CB)
My noble friend Lord Patel, in introducing this important debate, spoke about health data secure systems. I will speak about the Secure Anonymised Information Linkage system—the SAIL database—based in Swansea and funded by the Welsh Government, which runs on the mantra of “public data for public good”. It has been going for almost 20 years and has data reaching back a quarter of a century. The SAIL Databank was highlighted in the Health Data Research Service (HDRS) Digital Ecosystems Analysis report, because it has expertise in data pipelines, advanced data linkages and secure research infrastructure, powered by the Secure eResearch Platform, or SeRP. These capabilities are essential for the future of health data research. The SAIL database is very widely trusted, because it was so carefully set up and is so carefully managed. The report identifies it as one of the UK’s established examples, with “documented transformation logic and quality assurance” built in. The database has an extensive number of research projects internationally, and it reinforces the importance of trusted research environments, TREs, and secure data environments, SDEs, where approved researchers analyse sensitive data within secure settings, rather than downloading or transferring information. That model has maintained public trust while enabling high-impact research. Professor Simon Thompson, a co-director of the SAIL Databank and SeRP, has pointed out that they have been “recognised as a benchmark for the UK” and that their work linking “Welsh population data across health, education, housing, justice and beyond shows what’s possible when secure, person-level linkage is done properly and at scale”. It is one of the leading environments. Sharon Heys, the head of legislation and due diligence at SeRP, has discussed the difficulties in defining the lines of anonymisation and whether data is likely to be identifiable. I am grateful to my noble friend Lord Tarassenko for talking about the Biobank data. I had the privilege of being on the ethics committee as Biobank was being set up. The durability of Biobank and of SAIL represents the importance of considering all aspects before you even get started.
Baroness Freeman of Steventon (CB)
My Lords, I have worked on decision aids to help patients and healthcare professionals, and I am also an unpaid adviser on the board of OpenSAFELY, a system for allowing research to be carried out securely on data. Every healthcare decision we make is based on knowing what has happened to people like us in the past. Knowing the outcomes for thousands of people and how much those outcomes vary is the only way we can do better than just blind hope. It allows us to say, “Out of every 100 people like you who have taken this option, X had this outcome”. That makes all the difference for those faced with a hard decision. For those developing potential new treatments, analysing data helps them to see those outcome differences in detail. Shared information is the whole basis of medicine. We in the UK have unique health data, and we must do all we can to continue to learn from it and to communicate it to patients. On the other hand, I know how people feel when their trust is undermined. Society works by spreading the costs and the benefits across many people, but industries such as insurance and marketing benefit financially if they can target their products to individuals. They would love to get their hands on our medical data. As other noble Lords have said, when you talk to people, they say that they share their data for the benefit of society but do not want it to be used for things that stratify society such as differential insurance pricing, differential access to healthcare or welfare, or profiteering—quite understandably. Some people’s experience has been that of trust abused—healthcare records accessed or used inappropriately. Every abuse of power we learn of undermines trust a little more. The thing about data is that you need it to be representative. If trust is lost from some groups of people, we will end up losing the data of those groups of people; that erodes the value for everyone, especially those groups themselves. If you want to be trusted, you need to be trustworthy. Demonstrating trustworthiness takes dialogue, listening, honesty, owning up to mistakes, good faith and trying to do better. Where there is a breach, like at UK Biobank, it needs to be fully and transparently investigated with lessons learned. Everyone needs to know that their voices are heard, respected and acted on. Everyone should be able to say what they want to happen to their data. If they do not want it shared, that has to be respected too. I do not expect that my doctor’s consultation will be recorded and uploaded to AI for note-taking. For me, that is sharing my data, and I do not know with whom. As the National Commission into the Regulation of AI in Healthcare today reported from its consultation, “a majority of participants believing that patients should be informed when AI has been used in their care”. What are the Government’s plans for data-sharing opt-outs, and how will they ensure that they are always respected? Is consent always going to be explicitly sought for AI during consultations? Are patients being meaningfully involved in dialogues about all the uses of their data, as the Government make plans for more? We have to be able to answer “yes” to all these questions before we can reap the benefits that our data should give us.
Baroness Gill (Lab)
My Lords, today I address a challenge that sits at the intersection of public service and my professional background, and I thank the noble Lord, Lord Patel, for this timely debate. Over a decade ago, I was working in the data analytics sector. It was an era when my colleagues and I routinely repeated a phrase that has now become a bit of a cliché: “Data is the new oil”. We were at the beginning of a digital bonanza, watching a frontier expand while Governments maintained a largely laissez-faire approach, long before modern privacy regulations were covered by the Data Protection Act and GDPR that we rely on today. I raise this because the data landscape has evolved exponentially since my time in the industry. Today, the pressures to find solutions to chronic diseases are immense. While I deeply share the health professionals’ enthusiasm for laudable life-saving research, those of us with backgrounds in data know a quiet truth. In the rush to find health solutions, individual privacy can inadvertently be compromised if our security frameworks do not evolve as fast as the technology. We had wake-up calls this April, and some noble Lords who spoke before me highlighted the case of rogue researchers at a partner institution in China who violated their contracts and attempted to list the data of 500,000 UK Biobank volunteers on Alibaba. It was a near miss for our research ecosystem. Thankfully, swift action prevented actual sales and the data itself lacked direct personal identifiers but, as your Lordships’ House knows, the methods of data manipulation have grown sophisticated—far beyond what we imagined a few years ago. The rise of advanced artificial intelligence has fundamentally changed the game. Today, deidentifying data is no longer a permanent shield. With modern AI algorithms, bad actors can cross-reference anonymised health files with external commercial datasets to reidentify individuals with terrifying ease and accuracy. If the public begin to fear that AI will be used to turn their altruism into exposed personal medical records, public trust will evaporate. We cannot let that happen. I urge the Minister to secure the system so tightly that public trust remains unbreakable. I urge a shift away from data extraction entirely, moving instead towards trusted research environments and requiring external commercial players to run their AI analytics inside a secure government-hosted cloud, where they can query the data but never download or export raw files.
Baroness Murphy (CB)
My Lords, I take this opportunity provided to us by the noble Lord, Lord Patel, to talk about the data for research for the greatest health challenge of our time—dementia. We need to improve the quality, accessibility and use of dementia data to support research, which is in an extremely poor state. We identify people too late, if at all. There is poor follow-up and data linkage, and difficulty matching people to the right trials. One problem is that people get referred to memory clinics over here, often remote from hospital services there. That is good for access, but where there are no links to research organisations, diagnosis is rarely followed up and, if you have a mild problem, you are never seen again. There is a wholesale lack of understanding that if you wish to research dementia, you need to understand that social care services, both statutory and independent providers, are where the subjects are. Coding is inconsistent. Data is often unusable. Those eligible for clinical trials are invisible to research, so recruitment to trials is very low indeed. Over the four years from 2021 to 2025, dementia trials recruited only 551 participants, compared with 24,000 in cancer. The UK has strong basic sciences, major data resources, early phase trial capability and a trusted regulatory environment. However, the science is moving rapidly, and while the UK now has a major opportunity to build on these strengths and become a global leader in dementia research, we are very constrained by the lack of national leadership to align the science, diagnostics and trial delivery. We are even further away from the NHS adopting results and realising the full value of government investment. Governments since the early 1920s have done some very positive things. The Dame Barbara Windsor Dementia Goals programme in 2022 and the Medical Research Council’s £20 million investment into a dementia trials accelerator were excellent initiatives, but we need to go further and faster. Does the Minister agree that we should use the modern service framework to improve the quality and usability of dementia data and ensure that people are not lost to research after diagnosis? BARBARA is the brain ageing registry for biomarkers, access to trials, research and adoption—it is a marvellous name; I would love to know who thought that up. Surely the Government should make BARBARA a government priority by 2030. I ask for that to happen.
Baroness Brinton (LD) [V]
My Lords, it is a pleasure to follow the noble Baroness, Lady Murphy. I congratulate the noble Lord, Lord Patel, on securing this debate. As an obstetrician, clinical teacher and academic, his exceptional work for well over 50 years has reduced the risks to women in pregnancy and childbirth. I am sure that patient data will have been key at every stage and contributed to the life-saving and life-changing therapies and treatments. From these Benches we are clear that patient data must be available for medical research. I thank the Alzheimer’s trusts and others for their briefings on the real progress in treating diseases as well as the hopes for future research. I especially thank the Cystic Fibrosis Trust. My dear childhood friends, Julie and Vivienne Gastor, both had CF. All their lives they took dozens of tablets every day to mitigate their symptoms. In the early 1960s there was no hope of tackling the underlying disease and, as they and we knew would happen, they died as teenagers in the early 1970s. These days, using patient data, eligible people with cystic fibrosis can receive new drugs that treat the underlying causes by targeting the faulty CFTR protein. A partnership involving the CF registry collects evidence on their effectiveness in routine care before NICE appraises the therapies. This has meant that people with CF are able to access the new drugs while effectiveness data is still being gathered. What a life-giving transformation. However, we have also heard in the debate today of concerns about the wider use of patient data, especially regarding AI. It is prescient of the noble Lord, Lord Patel, to have called this debate before your Lordships’ House starts to consider the Government’s health Bill. The BMA has told us about threats to the common-law duty of confidentiality of patient data—that patient data can be used beyond the narrow protections available for use in academic research studies, that data functions would move from NHS England to the Secretary of State. This is not the first time that a Government have tried to change the data protection for patients regarding their own personal and medical data. From these Benches, we will challenge the Government to keep the research black box protections which my noble friend Lord Clement-Jones and I negotiated, with Labour support, during the passage of the Health and Care Act 2022. We will do this because—this gets to the heart of today’s debate—the vast majority of patients, doctors and academics believe that it is vital that patient medical data is made available for medical research but, and this is key, with the data securely, appropriately and strongly anonymised and pseudonymised.
Lord Kamall (Con)
My Lords, I thank the noble Lord, Lord Patel, for securing this debate on using patient data for patient-centred research, health and social care. I also thank all noble Lords who spoke and refer the House to my interests in the register—I will not name them all, because that would be the rest of my three minutes. We can have the most innovative healthcare systems in the world, but that will be meaningless if patients do not trust the NHS and other health and social care providers with their data. There is some consensus on the need to collect and share patients’ data to improve patient care and research, not only for today but for the research that will drive the innovation of tomorrow. Currently, not all patient data is digitised or shareable. Records do not always follow the patient. Information is often duplicated, delayed or not available when most needed. Although we hope that the single patient record and Health Data Research Service will respond to that challenge, the key will be patient trust. First, recent events that have been mentioned, such as the UK Biobank incident, have shown how fragile public confidence can be when governance and, outside that, cyber security, are not watertight. How does the Minister’s department intend to address the problem of researchers downloading patient data to work in less secure environments, sharing it on sites such as GitHub, or even perhaps selling or offering to sell it—they did not actually sell it—as we saw? Secondly, can the Minister tell the House whether organisations and individuals accessing patient data for research will be required to meet minimum cyber security standards? Thirdly, how will they address the concerns of civil liberties organisations such as medConfidential, which have found UK Biobank’s response less than reassuring? At this point, I should also thank the noble Lord, Lord Tarassenko, for his reassuring points on that particular incident. Nowhere is the need to get this right clearer than in dementia, as the noble Baroness, Lady Murphy, said. It is the leading cause of death in the UK, affecting individuals, families and the economy. A recent Alzheimer’s Research UK report tells us that the UK has world-class medical science, major data resources, early-phase trial capability and a trusted regulatory environment, but that progress is constrained by weaknesses in data co-ordination and implementation. Without high-quality data and interoperable systems, researchers and clinicians cannot identify patients early, recruit them into trials, evaluate new diagnostics or scale treatments across health and social care. This is not a technical detail; it is a foundation on which meaningful progress to diagnose and treat dementia will stand or fail. Will the Minister tell the House whether her department has considered how to connect existing initiatives so that dementia data is linked, accessible and usable for research? Real progress will depend on confidence: from clinicians that systems help rather than hinder, from patients that their data is secure, and from the wider public that data governance is transparent, proportionate and accountable.
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.
Source: UK Parliament Hansard API. Debate ID: 5404700.