Patient Data: Research
Lord Patel Excerpts(4 days, 19 hours ago)
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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.
NHS: Agency Medical Staff
Lord Patel Excerpts(5 days, 19 hours ago)
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Baroness Merron (Lab)
In the not-too-distant future, the mental health strategy will pull together all of the strands that the noble Baroness and her colleague are concerned with, and she is right to be concerned about them. In all these areas, patient safety comes first. That is the driver as to why we are reducing the use of agency. I agree that the end game in all of this is to increase the numbers of permanent staff, and the forthcoming workforce plan will support us in that.
Lord Patel (CB)
My Lords, can the Minister say in the spring of which year the workforce plan will be published?
Baroness Merron (Lab)
On the basis we have moved beyond spring of this year, I can say that, to ensure the workforce plan reflects the new Government we have, the Secretary of State and my colleague, Minister Karin Smyth MP, the responsible Minister, are working to ensure the workforce plan properly reflects the priorities —so I hope we will not be keeping your Lordships’ House or the noble Lord waiting for too long.
Healthcare Sector: Clinicians
Lord Patel Excerpts(1 month, 3 weeks ago)
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Baroness Merron (Lab)
Yes, I am very pleased to do that. I point to the National Healthtech Access Programme, which is exactly what the noble Baroness is seeking. It is a route for cost-effective and clinically effective technologies, such as the one the noble Baroness describes, so that we can see the best benefit to patients and the best value, and that supports more equitable access. NICE is currently assessing three projects, including using AI in histopathology for the diagnosis of prostate cancer and breast cancer, to give two examples, and we will shortly see the publication of those results.
Lord Patel (CB)
My Lords, the Minister quite rightly alluded to the clinical entrepreneur programmes, and she might want to say a bit more about how successful they have been. Does she agree that, for these programmes to succeed in making clinical departments more innovative, we need strong academic departments working together with universities and teaching hospitals?
Baroness Merron (Lab)
I certainly agree with that, because there are many aspects to this. On the successes of the clinical entrepreneur programme—some of which I have mentioned—we now know that, as of June, that over 10,500 occurrences of innovation are being adopted by organisations. That has resulted in the creation of over 5,100 jobs, and 448 NHS staff have been retained by, or have returned to, the NHS to be part of the programme. This is an extremely active area that will greatly contribute to services for patients: better care and safety, as well as tackling waiting times.
National Maternity and Neonatal Investigation
Lord Patel Excerpts(2 months, 1 week ago)
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Baroness Merron (Lab)
I absolutely agree with what my noble friend said about kindness; when we had the Statement last week, we discussed compassion as well. It is disappointing to have to talk about it, because it should be a given, but we have found that it is not. I totally agree that pregnancy is not an illness—I was once quoted as very sharply telling an interviewer that. I am not aware that it is, and it is not, but it is worth restating, in my view. On the role of men, I am very careful to speak about women and families; that is the right thing. I also clarify that, in this Statement, I do not believe anybody is suggesting that one form of birth is preferable to another. I think we would probably all agree that it is about the form that is safest and the right one for the circumstance.
Lord Patel (CB)
My Lords, I thank the Minister for the Statement today and the noble Baroness, Lady Amos, for her excellent report. We have many reports now describing the tragedies occurring in maternity services. I hope this report will be the final one before we go back to delivering the best maternity care, as we used to. It was world leading.
I am privileged to have been an obstetrician for nearly 40 years of my life, delivering many thousands of babies—normally, as people refer to it, and by caesarean sections, which are done when there is an indication to do so. We expect the mothers to enjoy normal deliveries, but also to enjoy the delivery when they must have a caesarean section. The greatest privilege I had was to hand a baby to a mother and see the first look on the mother’s face, which is unbelievable; I had the privilege to witness that first-hand, long before partners would see it. It is important that we deliver world-class maternity services and, therefore, that what the task force comes up with has the standards to be delivered. I hope it will be mandatory for those standards to be followed, monitored and audited against. It should be possible, at the mother’s first visit to the antenatal clinic, to have a plan for how her pregnancy will be managed by midwives and obstetricians. It should also be possible to have every maternity unit audited, as used to happen, when things go wrong involving the mother and the families—and to have a plan for how that will be tackled. I hope that will be the answer.
Baroness Merron (Lab)
I am sure we were all touched to hear what the noble Lord said. It must be a privilege to have done what he has done, and to have affected so many lives—those at their beginning but also the lives of the women themselves and their families. I am sure we are all grateful to him for that. The work of the task force, and of the expert reference groups—I am so grateful to the noble Lord, as well as my noble friend Lady Thornton, for taking part in one of them—will be to develop a plan of action, not just for how it will happen but for how it will be audited. Perhaps I should say that key to all this is accountability. The Secretary of State himself said in the Statement that what stuck with him from one of the bereaved mothers he spoke to was that accountability is what drives change. Certainly, when it comes to the regulators, that is why we are also taking action to improve.
Resistant Hypertension
Lord Patel Excerpts(2 months, 3 weeks ago)
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Baroness Merron (Lab)
Looking to the future, obviously, one can only act on clinical guidance. Renal denervation, as I mentioned to my noble friend, is an emerging option for carefully selected patients at the moment, as the noble Lord said. What matters now is that evidence is emerging, and that is why it is being reassessed. We will not have to wait too long to see what the future will bring in this regard, but it certainly has a role to play.
Lord Patel (CB)
My Lords, I will refine the previous questions. Resistant hypertension occurs when the blood pressure does not respond to standard treatment of two, three or even four drugs—hence we call it resistant hypertension. The reason why the renal system is involved is because the sympathetic nervous system acts between the kidneys and the brain. That controls vasodilatation and the production of hormones that raise the blood pressure. By denerving the renal system, which are nerves on the arteries of the kidneys, you can cut out one of the nervous system’s interactions between kidneys and the brain. What is important, therefore, is that people who suffer from resistant hypertension are treated by specialists at a specialist centre that considers denervation as one of the options, because it is not always the only answer. Therefore, does the Minister agree that people with resistant hypertension should be treated in a specialist centre?
Baroness Merron (Lab)
I certainly would agree with that. Indeed, those who are diagnosed with resistant hypertension—and the noble Lord has, as ever, outlined how that is defined in a far better way than I could have done—can be referred by their GP to secondary care hospital hypertension services, so, to answer the point made by the noble Lords, Lord Patel and Lord Evans, that does mean in-depth investigations and expert management. The House can be assured of that.
NHS: Dementia Treatment Trials
Lord Patel Excerpts(2 months, 3 weeks ago)
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Baroness Merron (Lab)
Yes, indeed. I am feeling positive about the way we are moving forward, about increasing research and about developing a frailty and dementia modern service framework by the end of this year, as the noble Baroness, Lady Casey, has called for. On the question of drugs, to which the noble Lord has referred, I can confirm that NICE is currently evaluating two licensed disease-modifying treatments for Alzheimer’s disease; it will meet to consider that on 8 July.
Lord Patel (CB)
My Lords, if our intention is to increase the diagnosis rate of early dementia, normally what we would do is to find a screening test that would identify people at risk of any disease. There is one called Mini-Cog; it takes three minutes to administer and uses word registration and recall and a clock to diagnose early dementia. Why do we not use that as a screening test, easily implemented by trained people to increase the rate of diagnosis of dementia?
Baroness Merron (Lab)
That will be considered. We have the Dame Barbara Windsor dementia goals programme, which very much aims to speed up the development of new treatments for dementia and neurodegenerative conditions by accelerating innovations, including in clinical trials. I agree that we need diagnosis that is effective and thorough, and the point that the noble Lord raises will of course be considered in all that.
Prostate Cancer Screening: AI
Lord Patel Excerpts(2 months, 3 weeks ago)
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Lord Patel (CB)
My Lords, several trials are assessing the use of AI for prostate cancer screening and diagnostics, as well as testing the accuracy of digital imaging and histological imaging of biopsies to understand better the progression of disease. Some of them are well funded. For instance, the screening programme has £42 million of funding. Similar trials are conducted for lung, ovarian, breast and pancreatic cancer. The common issue that comes out is that we need digital transformation throughout the NHS to deliver any of these uses of AI for cancer. We need a workforce that is trained to use it, and I hope that the workforce strategy that the Government are about to publish will specifically include how the workforce will be trained to use AI in healthcare.
Baroness Merron (Lab)
As I said, your Lordships’ House will not be waiting too long for the workforce plan, but I certainly recognise the noble Lord’s points. He describes the transformed service set out in the 10-year health plan, and the workforce plan will support that.
Compassionate Use Medicine Schemes: VAT
Lord Patel Excerpts(2 months, 4 weeks ago)
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Lord Patel (CB)
My Lords, going back to the question about access to compassionate medicine, as I understand, the Minister just stated that medicines that are not yet authorised or licensed can be issued if companies agree to provide them for free, and that HMRC charges VAT on them. If the medicines are free, how do you calculate VAT? If a shop gives away free chocolates, does it have to pay VAT?
Baroness Merron (Lab)
I am sure that the noble Lord would not want me to be quoted as suggesting that VAT should be charged on chocolates given free in shops, so I will not. The way in which VAT is calculated is a long-standing arrangement that companies are aware of. The medicines are treated as taxable deemed supplies, which means that VAT is applied even when no payment is made. VAT is worked out by calculating the value of those products, but if there is nothing similar, then an assumption is made. This is a usual way of dealing with that. I should also emphasise that VAT is a matter for His Majesty’s Treasury and has been for all these decades.
Miscarriage Care
Lord Patel Excerpts(3 months, 3 weeks ago)
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Baroness Merron (Lab)
The 10-year women’s health strategy is absolutely focused on ensuring that services and support are available equally, no matter where people live. They are variable, and that is not where we want them to be. I have just spoken about the bereavement services, for example. As of January this year, all ICB areas are expected to provide a seven-day-a-week bereavement service across maternity settings. That was not in place earlier, and it gives a sense of the trajectory.
Lord Patel (CB)
My Lords, in an era of more personalised medicine, it is important to note that the care of women who have miscarried is dependent on several factors: the gestation age when miscarriage occurs, the age of the mother, and any existing diseases. It is not just about the number of miscarriages the mother has had when the investigation starts. There should be more personalised aftercare for every mother who loses a baby.
Baroness Merron (Lab)
I hesitate to say “of course”, but the noble Lord is of course right. As I mentioned earlier, there is a range of reasons why miscarriage may be taking place. It therefore requires that whole-system approach, but also the life-course approach that I spoke of. I am also glad that through our research arm, the NIHR, we are funding research through Tommy’s, which we have spoken about already, on the beneficial effects of progesterone, to give one example. It is important that we continue, as we are doing, to invest in this research.
Healthy Life Expectancy: England
Lord Patel Excerpts(3 months, 3 weeks ago)
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Baroness Merron (Lab)
As I mentioned in an earlier answer, this is a long-term and complex matter which has developed over a number of years. It is totally unacceptable that a woman in Hartlepool, for example, will enter ill health some 19 years earlier than a woman in Richmond-upon-Thames. It is about embedding action on health in policies across government. However, as I mentioned, it is also about redesigning the system around the three shifts: emphasis on prevention rather than on sickness, in particular, but also a move to community-based health services, so that people can access healthcare where and when they need it, and, of course, digital access, too.
Lord Patel (CB)
My Lords, healthy life expectancy is a mix of two data: a more precise life expectancy and a much cruder self-reporting of the stages of health. This leads to a confusing interpretation and therefore is not helpful in policy-making decisions. We have to find and seek better information about healthy life expectancy and the parameters that affect it, to be more effective in policy decisions. Does the Minister agree?
Baroness Merron (Lab)
I definitely agree. That is why data, particularly that which drives us to make funding decisions to get funding to where it is needed most, is absolutely crucial. I find the term “healthy life expectancy” more useful than what used to be called “life expectancy”. That, to me, was always only one side of the coin. However, I take on board the point that the noble Lord makes.