Motion to Take Note
My Lords, I am grateful for the opportunity to lead this morning’s debate about the value of healthcare data and how it might be harnessed to transform outcomes for the health and wealth of the United Kingdom for generations to come. I very much look forward to the maiden speech of the noble Lord, Lord Bethell, and wish him every success for this and future contributions that he will no doubt make in this House.
Healthcare is a very personal subject and noble Lords may recall that I have spoken before in this House on the issue. My sister contracted mesothelioma and received poor care from the NHS, when she could not access existing health innovations in time to treat her, as there was no data even on the basics, such as where she could get the radical and uncommon thoracic surgery that she needed in a timely manner. Later, there was no data to allow her rapid path to a clinical trial that might save her life. This is the role of data for care navigation. In the four years since her death, I have come to realise that routine healthcare data has two other crucial roles to play: first, in generating life-saving breakthroughs through real-world research, for which the UK rightly has a global reputation; and, secondly, in providing the real-time care quality assurance that will allow the NHS to make sure that all patients have good quality care. Depending on your choice of expert, the prize in care quality analytics in routine data in cancer alone is tens of thousands to hundreds of thousands of lives a year.
Given that prize and my personal experience, I approach this debate as a patient advocate, not as a politician. In doing so, I have relied on the assistance of many individuals and organisations for advice. I would, however, like to single out one organisation and charity, Future Care Capital, and, in particular, Annemarie Naylor and Joel Charles, for their support and wise counsel as I have tried to get to grips with this complex area. It is my hope that noble Lords will make the most of this opportunity to begin building a consensus view on the national approach to high-value healthcare data which will permeate through here and the other place over the weeks and months ahead.
The value of data in improving healthcare and health is not new. It was the use of data by UK scientists Doll, Hill and Peto that showed the link between tobacco and lung cancer that has driven dramatic life-saving changes in policy, behaviour and life expectancy worldwide. One hundred years before Doll, Florence Nightingale used data to revolutionise the cleanliness of military hospitals, and Dr John Snow used data to identify the source of a deadly cholera outbreak in Soho. Now we have another unique UK opportunity for global leadership. The healthcare data we have amassed over the course of the first 70 years of our NHS can, if ethically and widely used, radically transform the treatments and technologies we will deploy to improve the health of our increasingly ageing nation. At the same time I want to ensure that as a nation, we pioneer reinvesting the social and economic value of this data in full, such that it benefits everyone in the UK, both their personal health and economically.
Across the country, fragmented NHS bodies are separately exploring ways in which to harness the value of the healthcare data they control, while addressing the technical, legal, ethical and cultural barriers to delivering potential benefits, working with researchers as well as industry players from the UK and overseas. Cutting-edge examples of which I am aware include the work of Moorfields Eye Hospital with Google DeepMind—whose artificial intelligence can now use NHS data to recommend how patients should be referred for over 50 sight-threatening eye diseases as accurately as world-leading doctors—and Sensyne Health’s collaboration with the University of Oxford and Oxford University Hospitals Foundation Trust to pioneer a remote management service for patients with heart failure. Given that our principal aim here must be to improve patient outcomes, I am certain that noble Lords welcome such data-driven innovations. I am, however, concerned that there is currently no clearly agreed or stated strategy which sets out how the NHS intends to approach and benefit from providing third-party access to the valuable healthcare data assets the NHS stewards on our behalf, while maintaining the highest ethical standards in respect of safeguarding individuals’ rights to have their personal data protected.
A strategy is required because the Government should have a clearly stated objective in this area, backed up with the ways and means by which to achieve it. It is not credible to devolve this to a fragmented, wild west community of individuals, semi-independent public sector institutions, US technology companies or, at worst, the global market. It is needed because the Government are doing too little to incentivise healthcare data quality “by design” through the exercise of relevant policy and funding levers, impacting its immediate value to the NHS to improve everyday treatment and care quality as well as its value for the purposes of research and innovation. It is needed because government has been slow to take steps to improve or join up data collection across healthcare organisations through an emphasis on standards, open interfaces and interoperability—and it is needed because we are falling behind. Although we are starting to invest in healthcare data access and curation to stimulate third-party access and innovation, our investment is relatively modest when compared with other countries. For example, Israel will invest 1 billion shekels—approximately £231 million—in a project to make data about the health of its population of only 8 million people available to researchers as well as private companies. That is twice the level of recent announcements by Her Majesty’s Government for our 65 million people.
Crucially, in the absence of coherent objectives for national data capture, the Government are neglecting to act at a national level to prevent what might be termed healthcare data “leakage” from an NHS whose primary focus must be on the non-commercial, day-to-day care of the nation. This leakage is already occurring through “barter deals” between individual trusts and commercial entities—for example, in the case of the Royal Free Hospital and Google’s DeepMind—and I expect it could worsen rapidly in new trade deals to be entered into post-Brexit with non-EU countries, in particular the USA. This, to my mind, is giving away the family’s digital silver.
Value capture should not be viewed as a simplistic cash transaction to the highest bidder. As the noble Lord, Lord Mitchell, eloquently laid out in previous debates, this would favour US technology companies and provide only a transient return to UK plc. Value capture can, and should, be more sophisticated than that. It can include widespread, cross-NHS rights to use new technologies derived from the use of data, discounted drugs, inward investment and health sciences job creation. It must also address the tension that exists between local and national bodies so that revenues can be amassed and reinvested at the most appropriate level. However, if Government continue to have no stated objectives, it is no surprise that value potential is lost in the commotion and that cash-strapped trusts are lured into one-sided deals.
There is merit in encouraging experimentation at the local level—I have already mentioned some high-profile examples—but in doing so there are also attendant risks. Those innovators engaging in health data usage and value capture may become over-influenced by the needs of an industry partner. They may become wary of linking up their data with that of other institutions for financial reasons, at precisely the time when joining up data would add national value.
Will trusts that are “data and expertise poor” be left having to compensate other “data and expertise rich” trusts in future for the intellectual property they help to develop, potentially exacerbating the postcode lottery in access to innovative treatments and, with that, health inequalities? In other words, do we want healthcare data to create value for the NHS and society as a whole, or for only elite hospitals? Moreover, if healthcare data-sharing agreements do not conform to any nationally agreed standards, is that not liable to impact the financial value generated in different places and, with that, erode public trust and support for related initiatives in other locations? Practically, on clinical trial access, when is it appropriate to use data to inform a patient that there is a trial in another trust that might help them, and how should that research contact take place?
As I have said, we are not altogether asleep at the wheel. The Government have supported the important work of the UK Biobank, Genomics England and health catapults. They have established Health Data Research UK and have recently confirmed their intention to invest in digital innovation hubs to harness high-value healthcare data in a bid to tackle some of Britain’s biggest health challenges. They are also establishing a new Centre for Data Ethics and Innovation and, only yesterday, announced their initial technology partnership code of conduct for data-driven health and care technology. These developments are to be welcomed but, to my mind, they fall short of the coherent approach that is needed if we are to make the most of the data revolution that is patently under way around the world. I would like to understand whether the Government have considered the chaotic implications that are liable to flow from this policy vacuum.
To my mind, the Government, with the help of balanced solutions developed across this House and the other place, should define their objectives for securing the social and economic value that healthcare data has the potential to generate. They should put trust in patients’ demands to have their data used to full effect and regard it as unethical if it is not. They should engage patient representative groups, clinicians and the wider public sector, as well as the general public, to establish the priorities for using healthcare data and reinvesting its value. They should put in place measures to ensure data quality “by design” and fund data clean-up and curation to hasten delivery of those priorities. They should develop a framework for healthcare data-sharing agreements involving NHS bodies to ensure that they conform to nationally agreed standards. They should also provide trusts with access to a dedicated commercial team in order to optimise the financial value to be derived from the healthcare data-sharing agreements they enter into with third parties.
Only then will Great Britain once again pioneer the use of healthcare data, lead rather than follow and capture the maximum value from the data assets offered by patients and citizens alike, while respecting each and every citizen’s right in law to opt in or out of such use. Only then will we be able to realise the prize that data promises, which is better care today through care quality management and better care tomorrow through innovation.
In recent months, I have spoken to noble Lords across this House about the issues that I have outlined today, and I am grateful to both the Government and Opposition Benches for their engagement, as well as their thought-provoking input. Ultimately, I believe that a consensus in this House and the other place is needed if we are to build and maintain public trust in sharing healthcare data to deliver social and economic value for everyone in the UK. I look forward to the contributions of noble Lords from across the House this morning.
My Lords, it is a great pleasure for me to follow the noble Lord’s excellent and visionary speech. First, I declare an interest as president of GS1, the barcoding association, which is involved with the department of health and the Scan4Safety and procurement efficiency programmes.
The noble Lord spoke with great force, all the more for being a patient advocate. Clearly, the opportunities that we have through the effective use of data must be seen not just in terms of a contribution to UK plc but, crucially, in terms of better outcomes for patients. I wholly endorse what he says. I like the concept of making the most of the value that can be generated through the use of this important data, and of taking full advantage of it as a health service and as a country. However, we face a conundrum, which is the public’s attitude to the use of their data.
The noble Lord said—and I agree—that we should put trust in patient demands to have their data used to full effect and for it to be regarded as unethical if it is not. He went on to say that we should engage patient representative groups, clinicians and the wider public sector, as well as the general public, in establishing the priorities for using healthcare data and reinvesting its value. He also said at a later stage that if the public want to opt out of allowing their data to be used in the ways that it can be, that must be respected. That is crucial.
We know from the work of the Parliamentary Office of Science and Technology, among others, that public trust in the governance of data is considered to be crucial to the use and expanded use of medical records for health research and management. We also know from surveys that the public are strongly in favour of the use of this data, but concerns remain. These are about the use of data without consent, the use of identifiable data, data security, a lack of transparency, potential discrimination by employers or insurance companies, and access by commercial organisations. Because of those concerns, some patients might withhold information from healthcare providers, and that of course could well be detrimental to their own health and that of other patients and to the quality of the data being collected.
The King’s Fund analysed the implications of these developments and said that it felt that national policy has been to keep a balance between responding to legitimate public concern about security and confidentiality of data, and enabling data to be shared and used by NHS organisations and third parties. I think that that is the right approach. Of course, you run into problems when you see previous attempts at data sharing in the NHS, such as Care.data, which was an unmitigated disaster. More recently, thousands of pieces of information about data were leaked by companies this summer, I think in July.
The problem is that other instances which may occur in the future will or could reduce public confidence. Is the Minister confident that the NHS is in a fit state? I take note of the Secretary of State’s comments this morning about the lack of progress that has been made in the use of IT generally in the health service. Is the Minister really confident that the service can tell the public that their data is secure? Secondly, can he deal with the problem that the public are finding that trying to opt out of certain information collections is becoming more difficult? I am indebted to medConfidential for this information. My understanding is that post GDPR and post new opt-outs, NHS Digital’s release register confirms that in two-thirds of releases patient opt-outs are ignored.
I shall give another example. There is no way apparently for a parent to make a consent choice for their dependent child using the online service. Instead, NHS Digital tells parents to send four forms of ID by post to their processing centre and that it will consider the request. I am fully behind efforts to use NHS information to the fullest extent and to make the most value out of it, but we will go down a wrong path if we make it difficult for the public to opt out where they want to do so. We know what will happen if there is a campaign— campaigns have been run previously. Care.data was a great example of a campaign run by a media outlet which has had a negative impact on the development of shared medical records within primary care. It may be painful, but more work and more ability for patients to opt out will in the end lead to the noble Lord’s vision being achieved.
My Lords, I also thank the noble Lord, Lord Freyberg, for initiating this timely and important debate. The issue of data and healthcare will be vital as the moral, legal and ethical issues come more to the fore. I am also pleased to follow the noble Lord, Lord Hunt of Kings Heath. I was a rookie health service trainee when the noble Lord was the first chief executive of the NHS Confederation. I realise having listened to him today that I am still a novice and he is still at the top of his game when it comes to health issues.
There is huge potential for the use of this data. Absolutely phenomenal gains can be made, whether about smart pills that can be taken, individual data, the application of artificial intelligence, remote procedures, or algorithms being created that can prevent health problems and be predictive. However, we must not get carried away by the potential without thinking about the ethical and governance issues that both noble Lords have spoken about previously. If we do not do this, data sharing will not work and, importantly, it will not get public support and acceptance. Without that, it will fail.
I want to look at three areas in the time that I have been allocated: governance, public support and trust, and the commercialisation and use of the data. I know I will not be popular if I start talking about NHS structure. It is never going to be the thing that gets people out of their seats and excited, but it is vital that we talk about governance structures which are smart and applicable to this new way of working. This explosion of data means that we need proper ethical governance, based around a clear strategy and outcomes for use, as the noble Lord has already said.
A plethora of organisations is involved in this: NHS England, the Department of Health and Social Care, the National Information Board, NHS Digital and Public Health England. This will lead to things falling through the gaps and no one being held to account for the use and application of this data. We have already seen a number of issues, including around how DeepMind Google uses data and Public Health England recently giving data to a tobacco company. There is, therefore, a need to streamline the governance structures and make one body responsible and accountable for the strategy, application and use of data in the NHS. My first question is this: will the Government commit to look at governance structures and make sure that there are clear accountability lines, and the possibility of one body having ultimate responsibility for the use of data?
As both noble Lords who spoke previously said, this cannot be done without getting the public on side through gaining their trust and support. I want to be radical and talk about a total rethink of this. We no longer live in a Victorian age of bureaucracy and a concrete-type world. We now live in a networked, digital world that is informed and connected. So whose data is this? It is my data; it is your data; it is the patient’s data. Why, therefore, do patients not hold the data, with government having to opt in? It is not fantasy to say that. Look at what Estonia is doing on digital usage by its population. It can be done. It would make government and the NHS think about the use of data—how it would be sold, what it is needed for, what the ethics of this are—rather than patients being passive and having to opt out. A radical view is needed. Will the Minister look at the radical option of data being held by the individual and government having to opt in?
There is nothing to fear if we get the arguments right, explain it to patients correctly and understand the outcomes. Most people will want improved health, not just for them but for their children, their communities and the population at large. We need a radical rethink on this, if we are going to change whose data it is and get the Government to where they need to be, not just on educating people about this but on understanding the application of this data.
The final issue I want to discuss is commercialisation, which has already been talked about by both noble Lords. I am pleased that, yesterday, the government standards were announced. That is very good but it does not go far enough. There are issues here. Once the initial data has been used, how will it then be used in the international market? What dividends will come back to the NHS from that? We are talking not just about getting the initial kick from the data back into the NHS but about how it and the IP can then be used more broadly. The issue is not just financial return. We must look at innovative ways in which the IP and spin-out can be applied and used free of charge back in the NHS. That is also important. Therefore, what thinking is there on commercialisation and application back to the NHS, so that it can benefit?
It is then a case of how we invest that. There is a good case to be made for a UK sovereign health fund, which could be used to reinvest in future technology and future use of data to meet the outcomes. Will the Minister and the Government look at the setting up and use of such a UK sovereign health fund?
My Lords, I too join others in thanking my noble friend Lord Freyberg for securing this important debate and the thoughtful way in which he has introduced it. In so doing, I declare my interests as professor of surgery at University College London, chairman of UCLPartners and an active biomedical researcher who has had the privilege, for many years, to use patient data as part of my programmes.
We have heard that data has been and will continue to be fundamental, not only to the delivery of healthcare but to biomedical research. There will be greater and greater demand for high-quality data. As a result of the changing demographic and the increased requirement for resources to deliver healthcare, there are now demands from those who provide healthcare services and those who pay for them to have data that informs how those resources are appropriately used. There is, of course, the advent of personalised medicine: the opportunity to understand far more about the individual and to better characterise the disease at a genetic and protein level—in occlusion to understanding better the characteristics that drive disease outcomes—and so start to tailor care. This is increasingly complicated because patients have multiple comorbidities and are exposed to many different treatments and interventions, making achieving a good result for the individual patient much more complex overall.
Then as we see in so many areas of technology, advances in artificial intelligence and machine learning will provide remarkable opportunities to apply those novel sciences to diseases and therapies to improve clinical outcomes and drive the more efficient use of healthcare resources. However, tremendous challenges attend the question of how data can be appropriately marshalled in the future to improve clinical outcome, to improve the welfare of patients and to drive the more efficient use of healthcare resources.
Noble Lords who have already spoken in this debate have identified many of the issues but one of the most important is the quality of available data. A huge amount of data is generated every day as healthcare is delivered up and down the country. If you take a simple example of an ultrasound scan of the heart—echocardiography—each echocardiogram generates about two gigabytes of data. With 1.2 million echocardiograms performed every year that is some petabytes of data, which is a remarkable amount just for a single test. If you look at the 10 most important imaging investigations in the NHS, some 17 million CT scans, MRIs and ultrasounds are performed every year. The volume of data is astounding, but much of the quality is poor. Is the Minister content that sufficient resource is being applied at a local level in NHS trusts and organisations up and down the country to ensure that high quality data is secured and that it is properly curated and marshalled in such a way that it can be applied for the benefit of patients and to broader research opportunities?
Beyond data quality there is the question of the skills required to drive this data revolution in healthcare. Data scientists are required in many different domains of modern human endeavour other than healthcare; therefore, healthcare organisations and research organisations will need to compete for those data scientists—that remarkable interface between mathematics, statistics and computational science. Is the Minister content that we have a strategy of education and skills development for health data so we will have skilled individuals available to drive the data science revolution in healthcare in the years to come?
Other skills sets will also be required. We will need skills to address the ethical questions, not only in terms of how data is used beyond improving an individual’s care, but whether using artificial intelligence and machine learning to make clinical decisions is ethical. We will need skills to develop the regulatory framework that allows for a much broader use of data for the delivery of care, and regulation of how that data is used to drive a research agenda and, as we have heard, broader commercial opportunities? Then there is the need for legal skills to ensure that—on a national level or individually by NHS organisations—the contracts and agreements that are entered into provide long-term benefit for the NHS and the nation.
Finally, there is the important question of trust. As we have heard with care.data, well-meaning and legally airtight initiatives to drive a broader opportunity to marshal data in the NHS failed because they failed to gain a social licence. How do we ensure that there is public trust with regard to the accumulation of more and more data and the application of that data for individual and broader societal benefit? How do we ensure that there is a consensus that data may be used beyond the individual and the health service delivery mechanisms to drive a broad research agenda and some of the other opportunities for wealth creation in our country? Are Her Majesty’s Government satisfied that they have addressed these issues sufficiently vigorously at the beginning of this important journey?
We have had the good fortune in our country over many decades to lead many revolutions in healthcare, be it in the area of in vitro fertilisation, transplantation or, more recently, mitochondrial DNA therapy. All of those have required very careful consideration in this Parliament of ethical, legal and regulatory issues and a firm commitment from Government to drive forward communication to ensure public trust and confidence.
My Lords, I really am very happy to be here and give my maiden speech today. I thank the noble Lord, Lord Freyberg, for calling this important debate and for his powerful introduction. I declare an interest: I am a trustee of the Scar Free Foundation, which is a medical research charity.
I thank the staff and the doorkeepers who I remember for their kindness and warmth when I was a boy and used to sit on the Steps of the Throne. They would help me find my way around and sometimes give me sweets that they kept in the cabinet where they kept the signing-in book. Even now, when I am walking round in circles they help me, but they do not give me any sweets anymore, I am afraid to say.
I come from a family of campaigners. The first Lord Bethell was a Liberal MP, a radical who wanted to change the world. He was a self-made son of a gardener who campaigned for the rights of the disfranchised slum dwellers of Edwardian Britain. He was a fervent campaigner for temperance. My father, Nicholas, who some noble Lords may remember and who I miss greatly, campaigned for rights for refuseniks, for the mujaheddin against the Soviet Union. He stood up against authority. He fervently did not support temperance. It is my ambition to walk in those steps. I would like to use the House of Lords as a platform to campaign for a better world and to challenge authority when necessary.
But picking causes does not feel easy these days. The issues are not clear-cut and this debate is a vivid example of that. On the one hand, as a number of speakers have mentioned, I am terrified of the threat presented by big data. We cannot underestimate the co-ordinated, criminal enterprises that steal and blackmail with data. I have had my financial records stolen many times. I have had much money removed from my bank accounts and I am frightened. I am getting to know some of you better, but I do not want you to know what is in my medical records and I do not want to know what is in yours, so this is something for us all to be concerned about.
I am also worried about the sloppy, arrogant culture of the big tech giants. In my background, I have campaigned against the racism of the far right in Britain and we had to work very hard—it remains a work in progress—to try to get tech companies to take down horrible material from the internet that foments hatred and violence. Their stubbornness in this matter is legendary.
It would feel at first blush as though the campaign against big data feels like a Bethell-shaped cause to challenge authority, but there is an important dilemma here, because I recognise that modern medicine is providing incredible dividends. The costs of medical provision are increasing dramatically more than global growth, and in my own life, my family have benefited tremendously. My wife’s sight was saved in the Moorfields Eye Hospital and one of my daughters was saved by important new medical developments.
So how can we make these two join together? I met a Scottish health professional recently who told me about an algorithm he had written that dramatically improves the treatment of dementia and Alzheimer’s. He had done this by using the records of millions of patients in a huge mathematical exercise. Where had he done that? Five years ago, he moved to Beijing and worked closely with the Chinese Government. He was very complimentary about his British associates. He told me that they were helpful but just did not have the technology and permissions to do the work he needed to do.
I remember when my father had Parkinson’s disease. Hospitals would lose his files so frequently that we travelled with a ring binder with photocopies inside. I remember visiting an eminent professor of neurology at John Radcliffe University. We went into his office and it was an incredible sight. From the floor to the ceiling, there were piles of paper. Every single horizontal surface was covered in reports and folders. We were waiting for this make-or-break decision about my father’s treatment and the professor turned to us and said, “I’m terribly sorry but I seem to have lost your file”. That moment felt like a metaphor for where we are in Britain with medical records.
With an average age of 69, your Lordships have a remarkable reputation for longevity. I personally want to live until I am 100 and I want my children to live even longer. I cannot think of a better way to make the world a better place than achieving that kind of objective, but I do not feel that this will happen if we have a ramshackle approach to record provision. This was brought home to me through my work with the Scar Free Foundation. I got involved with it when one day at home, a guest dropped a cup of tea on my 6 month-old son. He was scalded dramatically down one side of his body. His mother’s side of the family is Chinese and has delicate skin; members of her family with similar scalds have horrific disfigurement and disability. My family is Scottish. We are tough and leathery—I do not scar at all. During my son’s treatment, it was ambiguous which way he would go. Would he recover well or not? I am pleased to say that he did and is in very good shape, but it shows the genetic difference between families in a vivid way. For our charity, trying to figure out what causes that difference and apply those lessons to scar treatments is critical.
The NHS spends £4.5 billion every year treating difficult wounds and scars. The full cost to this country of scarring and internal fibrosis is incredibly high. I recognise the opportunity for Britain. Others will explain much better than I can the implications for jobs and health outcomes, but I applaud the code of conduct put together earlier by the Minister, which I cite as a good example of the kind of cause that I would like to be involved with here in the House of Lords.
My Lords, it is a great honour to follow the excellent maiden speech of my noble friend Lord Bethell. I know that all noble Lords will join me in extending him a very warm welcome. As we have heard, he brings a rich family heritage as well as the experience of a veteran campaigner outside of Parliament. I am sure that we will benefit from that dedication, energy and commitment in this Chamber. We look forward to his future contributions.
I am grateful to the noble Lord, Lord Freyberg, for the opportunity to speak in this important debate with esteemed colleagues. Healthcare data may seem dry to some but it is one of the great challenges and opportunities of the technological revolution. Before I move on to some specifics, we should bear in mind the backdrop against which the NHS currently operates—one of significant and sustained financial pressure. It should not be a question, therefore, of whether our healthcare system embraces technology, and opportunities in data within that; it must be a question of how. McKinsey published research on a “large OECD country”, which many have taken to refer to the UK, and a savings opportunity of up to 12% by simply implementing existing digital technologies, of which up to half could be data related. This is an opportunity the NHS cannot afford to miss. Let us keep that in mind when we consider the issue in the round. A financially sound, digitally enabled NHS is to the benefit of all, patients and staff.
That said, we have a way to go before we can consider the NHS well placed to capitalise. Last year, the DeepMind Health Independent Review Panel annual report reminded us that:
“The digital revolution has largely bypassed the NHS, which, in 2017, still retains the dubious honour of being the world’s largest purchaser of fax machines”.
However, I am hopeful that my right honourable friend the Secretary of State for Health, given that he has recently departed the department that is home to all things digital, is well placed to redress this. Indeed, he has already confirmed that technology implementation is one of his priorities. This is an agenda worth pursuing.
I was fortunate enough to sit on the House of Lords Select Committee on Artificial Intelligence. We considered AI’s implications for healthcare. The Academy of Medical Sciences, in giving evidence, said that its impact on the healthcare system,
“is likely to be profound”,
because research and development will become more efficient. New methods of healthcare delivery will become possible, clinical decision-making will be more informed and patients will be more informed in managing their health. So we have administrative gains, particularly if data can be centralised so that different silos can communicate. I commend this Government’s investment in joining up the data to improve the patient experience as they move through the health and social care system, but the gains are broader still—for example, in diagnostics. Microsoft Research showed our Select Committee its InnerEye technology, which will assist oncologists in reading scans. At present, 2 million women are screened for breast cancer every year and these scans are red at a rate of 55 per hour. Technology will reduce this without compromising integrity or commercial outcomes, and at a significant saving to the NHS. This is but one example.
We also saw examples in genomics and personalised medicine, as well as processing data to detect and monitor pandemics. I am encouraged by the digital innovation hubs, which will securely use data to improve the way we are able to prevent, detect and diagnose diseases such as cancer, heart disease and asthma so that patients can benefit from scientific breakthroughs much faster. In short, there are huge clinical and financial benefits if the NHS can capitalise. The question is how we can build trust and bring the public with us. Certainly, the NHS dataset is unique, in size and in longitude, so it presents a unique opportunity, but with that opportunity comes responsibility.
We have all heard of DeepMind’s health engagement with the Royal Free Hospital, the study involving the sharing of 1 million anonymised eye scans under a research agreement that began in 2016. It cost the hospital nothing, which is great, but it might reap huge financial gains for DeepMind and its parent, Google. Many will be uncomfortable with the idea of businesses profiting from exploiting their health data, as has been mentioned, so the right balance must be struck. Benefits in kind is perhaps one way, since it avoids explicit monetisation. However, the AI Committee concluded that what we really need is a departure from local deals being struck piecemeal and a new framework for sharing NHS data, developed and published by the end of 2018. I would be grateful for the Minister’s comments on that. I do, though, commend the forthcoming code of conduct for AI and digital technology, which will provide added reassurance to patients.
The National Information Board summed up the task well in describing its mission as,
“developing the strategic priorities for data and technology in health and care to deliver the maximum benefits for all of us, as citizens and as patients”.
It is that mantra, “to the benefit of all of us”, that we must lead with.
My Lords, I too express appreciation to the noble Lord, Lord Freyberg, for securing a debate on a subject so full of possibilities for enriching our knowledge and improving the lives of fellow citizens. In England alone the National Health Service deals with more than 1 million patients every 36 hours. The potential use of data is enormous.
The right reverend Prelate the Bishop of Carlisle, who takes a special interest in health matters, is particularly sorry not to be able to participate in this debate. I also congratulate the noble Lord, Lord Bethell, on the quality of his maiden speech. I was, furthermore, particularly grateful for the wisdom of the noble Lord, Lord Kakkar, who spoke from his great expertise in this field. My focus is on mental healthcare data, which was recently highlighted in the Church of England’s toolkit on minority ethnic mental health issues, launched at our General Synod in July.
We know from the Adult Psychiatric Morbidity Survey, conducted every seven years, that one adult in six has a common mental disorder. By gender this breaks down to one woman in five and one man in eight, with the rate for women increasing since 2000 and the rate for men largely static. It is important to know why this is the case. Most mental disorders are more common among those living alone, in poor physical health or unemployed. One should avoid simple remedies, but esteem, living in a community, relational contact, activity and purpose seem to correlate with better mental health.
It is also important to note that there are wider demographic inequalities in who receives treatment for common mental disorders. According to the 2014 survey, after controlling for need, people who were white British, female or in mid-life, which in this instance means 35 to 54—rather younger than the average of fellow Peers—were more likely to receive treatment. Black ethnic groups had particularly low treatment rates. That is a serious matter. Analysing the data by socioeconomic variables demonstrates fewer inequalities in treatment, although people in low-income households were more likely to request a particular treatment but not to receive it.
I appreciate that even a debate as lengthy and as valuable as this is not going to solve systemic issues. It is clear, however, that there are discrepancies in how people are served. In a very different arena from this one—criminal justice—the Lammy report, addressing disproportionality, proposed a standing order of “explain or change”: if the disproportionality cannot be justified, action must be taken to remedy it. In this instance it would be good to know what action will address the failure to treat a category of citizens on the basis of ethnicity.
One of the outworkings of the gospel is the creation of a new society where distinctions do not matter. That is no easy thing, since so much of our security, identity and understanding is based on distinction and difference. Ultimately, however, this is not healthy, and in an area of pathology and treatment where provision is as sadly lacking as in mental health, to make less treatment available where the key variable is ethnicity is not a justifiable way to ration the system.
I have said before, in respect of public service reform, that a failure to include a clear relational element is a great deficit in any programme. I trust that in the wake of the Windrush scandal we may yet be learning that lesson.
My Lords, I thank the noble Lord, Lord Freyberg, and congratulate my noble friend Lord Bethell on his excellent speech.
The scale of expenditure on health and social care—some £180 billion together—makes this a very important debate. Because of the ageing population and the growing sophistication of medical intervention, health and care now absorb 21% of public expenditure and account for over 10% of GDP: more than twice the percentage of 25 years ago. This scale, however, means that the opportunity to deliver benefits through digital change and intelligent use of data—in all its forms—is quite enormous. I was delighted that Matt Hancock’s first move as Health Secretary was to dedicate £475 million to enhance technology in health and care. Perhaps the Minister could kindly confirm whether that is new money and the timescales involved for it.
1 should start by declaring an interest as a recent Data Protection Minister, a new director at Health Data Research UK and a NED at Capita. Of course, the use of data to advance medicine has a distinguished history. In 1854, in the context of a devastating epidemic in Soho, John Snow showed that cholera was spread by water, after research into the wells from which those afflicted drew their supplies. In 1847 Dr Semmelweis showed, after examination of records in Vienna’s hospitals, that puerperal fever was spread by physicians who had examined corpses and then women in the delivery room, without washing their hands.
From my relatively inexpert position, I shall add three thoughts to the debate. The first is on data as a feedback mechanism. My work in Downing Street on the Citizen’s Charter and my 17 years in retail taught me the value of customer feedback in improving services and outcomes. I often feel that the NHS is not listening to and taking advantage of feedback. I remember turning up to an appointment at Guy’s with a needless cancer scare. When I went in to see the consultant, it turned out that the attachment to the doctor’s letter was missing. She said, “Oh, it happens all the time”, arranging cheerfully for me to have another expensive test. Why not place power in the hands of the patient, as when one is pregnant, and share all test results and reports with them on paper or on an app? I have also been struck by the value of wearables such as Fitbits, which certainly encourage me to get more sleep—an area that has the potential to improve health outcomes and reduce dementia.
Secondly, on digital delivery, we all see how public services fail—often through a lack of incentive—to join up the dots. Providing patients with their health data would help as they could talk to family and friends and ask questions about persistent conditions. The House has done some trailblazing work on AI, which can help with the testing of drugs by repeating checks and variations at a stupendous speed, as I learned from the Motor Neurone Disease Association. It is better than humans at checking routine results like back-of-the-eye tests and X-rays. The disciplined application of digital information can enormously reduce dispensing error. I spotted this in use first in drug administration to the elderly in a BUPA care home.
However, training in and discipline with the medical process is vital. At a recent update with a consultant after a five-year gap, I could not quite believe the graphs of my various tests. Then I saw that the latest data had not been entered and my hard-achieved efforts to reduce weight and improve health had been totally missed, so initially the doctor was completely on the wrong tack. How often may that be happening? Then there is the use of digitisation in online booking, automated patient lists and patient flow, which is displayed so well, for example, at St Thomas’. This should be applied at every hospital and GP surgery in the land.
Thirdly, I want to comment on the public’s trust in the handling of data. I should start by saying how delighted I was at the appointment of Dame Fiona Caldicott, the former principal of my college, Somerville, as the first National Data Guardian for Health and Care.
However, we should not go over the top on data protection: healthcare is provided in this country free for those who seek it. I suggest that in return data in the system should be used by hospitals and scientists, and in some controlled commercial ways to improve outcomes, and that aggregate anonymised data should be published. The excellent Library Note described the myriad sources that exist. I would add another: housing data, as damp, cold housing costs the NHS billions in preventable illness. I know that experiments in Wiltshire to link GPs to housing ills have been successful. All the sources of data can be brought together much better. It will of course be important to protect the data from hackers and others, by sensible precautions and fierce enforcement—a good use, I would say, for some of Mr Hancock’s money. However, we should not get too distracted by data protection as we promote data use for the good of mankind.
Lastly, I ask the Minister what we can deploy from overseas. There is much to learn from the US but also from Australia, which uses Skype-style hospital consultations to deal with remoteness, and from Singapore, where I saw a pioneering use of sensors built into pillows to monitor patients in hospital and care.
My Lords, I declare an interest as a shareholder in Sensyne Health plc, whose business is in medical artificial intelligence. I thank my noble friend Lord Freyberg for sponsoring this debate and for his truly excellent speech. He and I have been working closely together on this project for the past few months.
I very much enjoyed the speech by the noble Lord, Lord Bethell. He says he is a campaigner. I believe him, and I am a campaigner too so perhaps we can campaign together. I also thank Future Care Capital, which has been very supportive throughout, particularly Annemarie Naylor, who has kept me in line and continually encouraged me on this project.
My words today can be summed up very simply: I want to put as much pressure as I can to ensure that the huge potential value of our medical health records is channelled back to our NHS. I want that value to be maximised. In a letter to me in the final stages of the Data Protection Bill, and following some pretty intense lobbying, the Minister included the following sentence:
“We want to examine how we can maximise the value of the data for the benefit of the NHS and those who use and pay for it”.
I fought hard to have the words “maximise the value” inserted into that sentence, but I now read and detect that his department is looking to conclude commercial arrangements that are “fair” to all parties. I do not want to nitpick, but “fair” is a serious dilution of “maximise”. It is a soft, woolly word through which the international giants will drive a coach and horses. “Maximise” is strong and unambiguous. So I ask the Minister again: will commercial contracts between NHS trusts and private enterprise be maximised, as I would hope, or simply fair, which would benefit only big tech and big pharma?
When the Bill was passing through your Lordships’ House, it was frequently mentioned that data is the new oil—on Tuesday, no less a figure than the most reverend Primate the Archbishop of Canterbury described data as more valuable than gold—and there can be no doubt that medical records are probably the most valuable data of all. By sheer chance, we find ourselves sitting on a treasure trove of rich patient data. That is because the NHS goes back to 1948, and uniquely in the world it possesses tens of millions of patient records. On top of that, we have a diversified population, which makes these records even more valuable. Many authorities I have spoken to value this data as being worth billions of pounds.
Artificial intelligence, coupled with machine learning and complex software, can now produce algorithms that, together with highly professional supervision, are able to predict clinical issues quicker and much more accurately than has previously been the case. Every physician will tell you that the sooner potential patient issues are diagnosed, the more likely it is that there will be a successful outcome. Analogies are always tricky but I cannot help thinking about the North Sea oil exploration and discoveries, which have proven so beneficial to our economy since the 1980s. In oil, there are parallels with NHS medical records. In its natural state oil is crude and hard to capture, but with commitment and huge investment the sticky, viscous liquid can be turned into petroleum products. So it is with medical records. The data is incomplete, scrappy and located in hospitals up and down the country. It too needs to be mined and refined, but with major investment that can be done.
I have pushed hard for the setting up of a sovereign health fund into which the proceeds of income generated from the licensing of NHS medical data records can be placed. I know the thinking is more towards a regional approach, but I shall add a caveat. We can already see the digital companies crawling all over NHS trusts. It is evident that these trusts have been outnegotiated. At Moorfields, they entered into a barter agreement with DeepMind. They failed to realise that the real value is in the algorithms produced, which are coveted by healthcare providers, pharmaceutical companies and health insurance companies around the world. This is where the value is—in the worldwide intellectual property. Big tech knows it; the NHS does not. A sovereign health fund would develop a pool of commercial, clinical and digital expertise, able to negotiate head-to-head with the global companies. It would maximise value.
We have a fantastic opportunity to generate major income for the NHS. To succeed we need courage. Will the Minister and his department be brave and bold enough to ensure that our NHS gets the maximum value it deserves?
My Lords, I too am grateful to the noble Lord, Lord Freyberg, for the excellent, comprehensive speech with which he opened this debate. After hearing my noble friend Lord Bethell, I am sure that many noble Lords will share my wish to hear much more from him in the future.
I draw your Lordships’ attention to a little-known success story of the initiative of GPs in England—the creation of two databases of notifications of their clinical work. These databases are SystmOne and EMIS. Input is mandatory for all primary practices in England. These databases are widely used across the medical profession, not only in primary care. They have been in operation for some 20 years and provide instant access to statistics on, for instance, cancer, diabetes and heart conditions. I am advised that the secret of their success is that the programmes were written by doctors. They are completely anonymous—this subject has been mentioned by several of your Lordships. Great steps are taken to make sure that the data input is anonymised. There is certainly nothing to match them among the acute hospital trusts and there is no other country in the world to match them in the comprehensiveness of the data which they store and make available for medical research in England and worldwide. My noble friend Lady Neville-Rolfe mentioned the excellent advances made in Australia, Singapore and other places. But I was told that in New Zealand—which prides itself on its primary care—there is no equivalent even there.
Here in the United Kingdom, practitioners act as gatekeepers. In many countries with admirable primary care—and, incidentally, which spend a greater proportion of GDP on it—a patient is referred at an early stage to a specialist in, say, cancer or diabetes. In England, the practice of triage enables the GP to assess the needs of the whole man—or comprehensive gender equivalent—and only then to refer him, or her, to the appropriate specialist.
These databases are a shining example of the contribution of general practitioners to primary care, which was so aptly described by Simon Stevens, chief executive of NHS England, as the jewel in the crown of the NHS.
Time does not permit me to go into greater length on this subject in this debate—except, possibly, to say that much more use should be made of general practices to relieve pressure on A&E departments. But that is for another day. These databases are a fine example of the use of healthcare data in the United Kingdom which, in so many ways, leads the world.
My Lords, when speaking of data in research, scientists and medics refer only to quantitative research, as has been done in this debate so far. But qualitative research also produces immensely beneficial data.
I declare an interest as former chair of the UK ground-breaking healthtalk organisation. It has created a platform presenting thousands of free-to-access video and audio clips, drawn from rigorous qualitative research, to help people learn about their condition, manage their own health and make decisions about their treatment.
Helping patients to find out what it has been like for others who have faced the same health conditions as them has been one of the most transformative aspects of the internet. But people worry whether the information they find online is reliable and need healthcare professionals to guide them to reliable sources of peer information online. This qualitative data is used to teach medical students and nurses about what matters to patients and to help design services that meet the needs of all concerned. In line with the Department of Health’s expanded focus into social care, a new platform, socialcaretalk.org, is currently being developed, which will include hundreds of interviews with people who have experienced social care first hand.
Healthtalk.org is run by a charity, DIPEx, in partnership with the Health Experiences Research Group at the University of Oxford’s Nuffield Department of Primary Care Health Sciences. Rigorous qualitative research methods are used to collect interviews with patients on film, which are then analysed for themes and turned into a multimedia resource that is widely used by the general public and health professionals. Evaluations have found that users of the platform report better understanding of their own health and greater confidence in talking to others about their health, and feel more inclined to take an active role in their own healthcare. Site users say that they find information on the website that they have not found elsewhere and answers to questions that they would otherwise have asked their healthcare professional. A third of respondents stated that the information on the website had reduced their need to make an appointment with a health professional. More than half the UK population uses the internet to seek information about their health. Healthtalk.org was used almost 6 million times in 2017, and the website covers more than 100 health topics.
The work of the team in the UK is being replicated around the world by 13 other member countries across Europe, North America, the Middle East, East Asia and Oceania, which have joined the DIPEx international collaboration. These sister international group websites are creating and developing together, and the qualitative data produced spans 11 languages and 42 health conditions. Including the UK’s healthtalk.org website, 140 conditions are covered, with well over 120 publications in peer-reviewed international journals. These publications are based on thousands of hours of audio and video records of interviews, and are a valuable qualitative data resource.
These outstanding results depend on funding from charities, philanthropic donations and government bodies. I ask the Minister and his team to recognise the power of patients’ stories and experiences and how they can be used to provide not only information and support for people with health conditions, their families and carers but reliable resources of knowledge and understanding for those institutions that will train our healthcare professionals in the future. They must be well funded, and qualitative data must be valued alongside quantitative data in the health service.
Talking about data, as I have only used four minutes, could the clerk add two minutes to the debate that I am speaking in later this afternoon?
I thank the noble Lord, Lord Freyberg, for initiating this debate. It is a pleasure to take part in a debate about how data will improve the health of the nation. It is not only crucial but has huge potential for the future of the NHS. I take this opportunity to congratulate my noble friend Lord Bethell on his maiden speech and look forward to his future contributions.
I welcome the £400 million-plus investment in new technology in hospitals, making patients safer, reducing cost and, importantly, linking people to access their health services at home. I also welcome the £75 million available to trusts to help them put in place state-of-the-art electronic systems. Those again save money but, crucially, have the potential to reduce medication errors by up to 50% compared to the previous paper systems, and to cut bureaucracy, making life better for staff, showing how electronic health records and other smart tools can support nurses both in and out of hospitals, benefiting patients who may have many health problems while ensuring that doctors are clear on their legal responsibilities.
Today, the Minister is setting out plans to make the NHS the most cutting-edge system in the world for the use of technology by investing a further £200 million to transform a group of NHS trusts into internationally recognised centres for technological and digital innovation. As he says, we are setting a gold standard for others to follow. Is that extra money? The future is to see more technology available to all, not just a select few areas of the country and not subject to a postcode lottery, thereby avoiding variations in patient outcomes and seeing all hospitals digitised as soon as possible, with healthcare becoming more integrated. In social care, for instance, the use of data is even more essential.
In developing a culture in which innovation can be rapidly adopted and rolled out across the country, we need a clear, robust strategy to take the NHS forward and not fall behind other nations—a culture that empowers to help make that change happen. As I said earlier, the UK certainly has a real opportunity to be a global leader in health data research by capturing all this potential, including artificial intelligence, the application of genomics to medicine, and the development of a range of new diagnostic tools and therapies for conditions that will enable more healthy ageing.
The evidence is out there showing how we can use technology better to create more efficiencies in passing information around and, importantly, in improving quality. The public and healthcare professionals must have confidence that access to patient data is appropriately managed so they can plan services and research new treatments. It must be clear to the public that their data matter, and that the data on research on new treatments to the NHS are stored safely. We need to bring together patients’ trust in the data in making informed choices from among other healthcare options.
Every time we go to a doctor we receive a diagnosis and, when we start a new treatment, the information goes into a database. The introduction of electronic patient records means that a patient’s journey in the health system is more accurately recorded and easily accessed, with patients receiving more effective care by having a digitised record. When we put all that together, it is a database combining millions of data points which then can be used for research purposes. Researchers are now harnessing vast amounts of information to assess what works in medicine.
There must be adherence to very strict protocols to prevent any leaks of personal information, and provision for the public to opt out, if requested. It is regrettable that some areas of the NHS have been slow to adopt information technology but we know that new technologies are changing what type of care can be provided and how it is delivered. We must support those trusts, while challenging others which are slow to engage, and help them to remove barriers. It is vital to support organisations which want to make changes in driving up productivity, bring on board new innovations, use data and welcome new technologies.
Medicine and public health are constantly evolving as new research and technology opens the doors to new ways to treat or prevent diseases, so we are able to live longer—and, importantly, live well longer.
My Lords, I join in the thanks to my noble friend Lord Freyberg for introducing this very topical debate. I am grateful to the Library for the very useful research note we received. I also join in the congratulations to the noble Lord, Lord Bethell, on a fine maiden speech. We all respected his late father for his many campaigns.
I was fortunate, like the noble Baroness, Lady Rock, to be a Member of your Lordships’ Select Committee on Artificial Intelligence. A major conclusion of our report was that one of the biggest beneficiaries of the effective use of AI and data will be the healthcare sector and obviously the National Health Service.
As my noble friend Lord Mitchell mentioned, data is the new oil and is the fuel of artificial intelligence and the fourth industrial revolution. Clearly, the considerations of privacy, public trust and recent breaches of data security are of widespread concern and need to be properly addressed. But big data, if it is fully embraced, has the potential to provide huge advances in improved treatment, risk mitigation and—a point that has not been mentioned by other speakers—cost savings to the National Health Service.
It is encouraging that the Government have identified AI and data as one of the United Kingdom’s four great challenges in the industrial strategy. Today, we measure the human body in several metrics: heart rate, blood pressure, temperature and glucose levels. I do not profess to have any medical expertise, but it is well known that we have about 10 trillion cells in the human body and, with the advances in AI and technology, we can now measure the quantified self with data streams using wearables such as Fitbits and Apple watches, heart rate monitors and others. Many believe that, within 10 years, we will be able to instrument almost every cell in the body in real time.
We are increasingly moving from a world of reactive health to preventive health. Analysing much of the healthcare data from the NHS offers huge opportunities in preventive medicine. It is well known that there is no central database for medical records within the NHS, which highlights the need for more interoperability of health information systems. I was interested in the GMC report last year which highlighted a significant step change in the UK healthcare data landscape from the 26 research centres. While identifiable medical records are rightly strictly regulated, there is potential—a point made by the noble Viscount, Lord Bridgeman—to anonymise more data, which would prevent data scientists from breaching privacy laws. We have the biggest pool of healthcare data possibly in the world within the NHS. Apart from the obvious benefits of the primary use of healthcare data within the NHS, there are the secondary uses outside the NHS. We could radically reduce the cost of healthcare using preventive diagnosis—a very important point. By way of example: within five years, many believe that, with the effective use of data, we could tackle almost every type of cancer through early detection. Yesterday, I had lunch with Salim Ismail, the founding chief executive of Singularity University, which brings together the top experts in the fast-moving technologies around the world. He believes that the NHS could go from spending an average of £250,000 per patient down to £50,000 in the next 10 years. This is profound.
In the history of mankind, we have never seen so much intensity of innovation—from solar energy, autonomous cars to drones to biotech and genomics, to neuroscience breakthroughs and many other disruptive technologies. With access to more data we are now on the brink of understanding and solving some of the major mental diseases such as Alzheimer’s, Parkinson’s and dementia. Using technologies with the benefit of large datasets, such as FUS—focused ultrasound—could revolutionise the treatment of many illnesses non-invasively. We need to shift legacy mindsets to embrace new ideas. By embracing blockchain technologies we could dramatically reduce the cost to the public sector of healthcare. Time restricts me from elaborating on the benefits of blockchain, but I was encouraged by the recent reply that the Minister gave me to an Oral Question that the Government were embarking on a number of pilot studies looking at these benefits.
I hope that more can be done to promote and accelerate the analysis of large datasets within the NHS. By doing this, the United Kingdom has the potential to be a global leader in health and wellness in the 21st century.
My Lords, this is a topic of great importance. I thank my noble colleagues who have succeeded in securing the time for this debate. I was very pleased to hear the remarkable speech by the noble Lord, Lord Kakkar. The maiden speech by my noble friend Lord Bethell was very encouraging; I am sure that he will live more than 110 years, having wished for only 100 years.
We are privileged to live in a golden age of medical innovation. New treatments are coming on to the market at an accelerating rate due to a number of new processes which are transforming surgery, pharmaceuticals, and care overall. Another area of great innovation is data. Big data has transformed the traditional working models of some industries and, when applied to datasets of sufficient scale, it can be exceedingly powerful at highlighting trends and suggesting changes. It therefore seems logical to see how the NHS could benefit.
Each year, the NHS collects terabytes of data on its patients. Those patients have a statutory opt-out, but we see that in practice most of them make the sensible decision to continue to grant access to their data so that processes can be improved going forward. This data is collected and processed, but the NHS has not started to use big data technologies on anything like the scale of other industries, such as logistics or shipping. Part of the reason for that is obvious—the NHS is not a tech company, and primarily deals with care and preventive medicine, but other barriers are more subtle. One area is privacy concerns. This data could cause great damage if it were to be stolen by the increasingly dangerous state-backed hackers of today. The solution is to invest in proper computer systems for the NHS, and to use all arms of the state to safeguard our data.
We must also make sure that important data is properly recorded. There are no reports on this, but I often see patients in hospitals filling in paper forms that are not obviously copied to an online portal. For repeated information I can see the reason why, but it would streamline processes to be able to auto-fill large parts of the form. Furthermore, that data is not easily accessible and will be expensive to find and send to patients. When new data protection laws and changing attitudes mean that people want better access to their data, this will have to change. Finally, the most recent NHS England data and datasets consultation confirmed and enhanced the recommendation of the Francis report:
“A coordinated collection of accurate information about the performance of organisations must be available to providers, commissioners, regulators and the public, in as near real time as possible”.
All nations now run their own healthcare, and increasingly city and regional mayors will have devolved health powers. This is a positive step. I have always supported devolution, for I think it leads to better decision-making, more experimentation and greater accountability. But different data collection protocols could result in incompatible datasets to which big data methods cannot be applied. Can the Minister say what plan the Department of Health has made to ensure that fragmentation of care delivery does not damage the ability of the health service to gather data at the national level?
My Lords, I congratulate my noble friend Lord Freyberg on securing this timely debate and on his thought leadership and his excellent contribution. I also congratulate the noble Lord, Lord Bethell, on his eloquent maiden speech. I know that we are not supposed to believe in the hereditary principle any more, but I am quite sure that he will bring the same credit to this House as his four predecessors did.
As a former Treasury official, my interest in this debate is in the prosaic issue of finance. Pressures on NHS expenditure are set to increase hugely in the years ahead; that is partly due to the long-predicted demographic pressures finally arriving, but it is also about raising expectations about the standard and quality of care. According to the independent Office for Budget Responsibility, spending on health and adult social care is set to rise by 3.2% of national income in the next 20 years. That is £64 billion at current GDP levels. Taxes will clearly have to rise, but so will the efficiency and effectiveness of the National Health Service, and that is where the use of data comes in. Take Tesco or Amazon. Using their customers’ data to provide a better service is fundamental to their business model. The NHS has a dominant market position in its field; it needs to find a way to do the same. I welcome the new Secretary of State’s commitment to technology-driven health and care and the £475 million he has put on the table; like other noble Lords, I hope that that is new money. But we are still not making sufficient progress: the whole approach is too fragmented and balkanised.
Britain starts with an advantage. The clue is in the name: we have a National Health Service. It should not be beyond the wit of government to join up hospital data with general practitioner and other data sources through greater interoperability. But, to use one example a GP mentioned to me the night before last, in many parts of the country paramedics in the ambulance service still cannot access a patient’s wider medical records. This cannot be good for the service patients receive.
I know and recognise that the mishandling of large-scale data initiatives, in particular the care.data programme, has not been conducive to public trust. Many noble Lords have spoken eloquently on this subject today. Obviously we need a coherent, comprehensive and ethical system for protecting people’s privacy, and we need to make restoring trust in sharing health data a national priority.
The message should be simple. If we are to nurture the right to a publicly funded health system, we have a duty to share our data. Other countries have grasped this nettle and their citizens have responded. We must do so too. That will require strong leadership from the centre as well as at a local level. I would strongly recommend a campaign which health practitioners and patient advocates own and lead.
Healthcare data is undoubtedly an asset. But I am agnostic at this stage on whether we should seek to monetise it. I recall a debate some years ago in the Treasury about the Ordnance Survey: should it be privatised or not? Were its services effectively a public good for which no charge should be paid? In the end, the Government, correctly in my view, went for a more open-source approach. Healthcare data may be different. The fact is that trusts are already exploiting its value potential commercially although, as my noble friend Lord Freyberg suggested, some of the current deals look too one-sided. If the NHS could harness its negotiating power at a national level, underpinned by a strong national framework on confidentiality, I am confident we could unlock much greater value. As my noble friend Lord Mitchell said, our aim should be to maximise that value. If it were clear that value would be recycled in higher spending on health and research, I believe we could yet secure the necessary public support.
The Treasury’s balance sheet review is due to report in the Budget and is set to cover intangible assets. I hope the Treasury will work with the National Audit Office to develop an appropriate accounting framework. Above all, the review provides a golden opportunity to examine the value of NHS information the better to inform public debate. Knowing the Treasury as I do, I am sure that, even now, officials are considering the best way of unlocking that value. I look forward to the Government bringing forward a vigorous response to the review in due course.
My Lords, I thank the noble Lord, Lord Freyberg, for introducing this important debate and congratulate him on his masterful tour d’horizon in his speech. I support his demand for a national strategy on this issue—we must not be left behind. I also very much enjoyed the maiden speech by the noble Lord, Lord Bethell; as I sat here, I found myself musing on whether he would follow in the temperance footsteps of his grandfather or the non-temperance footsteps of his father. I look forward to hearing a lot more from him.
As we have heard, the NHS has the most enormous amount of valuable data that could be used for improving patient care in a large number of ways; to me, that is the most important objective. First, data can help healthcare providers to measure their performance against baseline standards and against best practice in other similar providers. It can alert us to problems with patient safety and emerging quality problems. Digging into the detail of data can often reveal where providers are failing and suggest solutions—I shall give an example of that later. Data can assist regulators and inspectors to reach their conclusions. It can inform clinical decisions, through what it reveals about efficacy and outcomes, and can influence commissioning decisions through what it reveals about cost-effectiveness and the effects of strategies on public health. It can be used to assist research and to plan and assess clinical trials, and can help agencies to plan and reconfigure services.
The noble Lord, Lord Kakkar, mentioned the importance of the quality of data. He told us about the massive amount of it, which made me wonder how accessible that data is to researchers—if it is not easily searchable, it will be like looking for a needle in a haystack, in the same way as the doctor, mentioned by the noble Lord, Lord Bethell, looks through his pile of paper files.
We have heard about many issues of concern. First there is patient consent and privacy, about which the noble Lord, Lord Hunt, was so eloquent. We have heard about the need to prevent exploitation and discrimination from the right reverend Prelate the Bishop of Southwark. We have heard concerns about how data is made available to commercial companies, how value can be realised and about the ownership of private data by a few large corporations. The noble Lord, Lord Mitchell, asked us to maximise that value and he is absolutely right, but there need to be enormous safeguards. I very much agree with him that the NHS, too, needs experts. If it does not, the experts in the big data companies will, as he put it, “crawl all over us”.
A transparent public dialogue is needed about how data is currently used, the opportunities for the future and how risks can be managed. It is vital to balance the benefits of sharing data, which are enormous, with concerns about security and confidentiality, but these concerns should not be a barrier to progress. Many noble Lords have mentioned the crucial need to rebuild patient trust following the care.data problems and recent massive leaks—most recently, this was mentioned by the noble Lord, Lord Macpherson.
According to the Royal College of Physicians, patient-level data containing patient characteristics, as well as information about treatments, pathways and outcomes, are the most valuable. Indeed, such data can also reveal inequalities in access to care and the quality of care provided to different groups; it can also help to make comparisons of outcomes from different providers fairer, when we know something about the case mix they face. How fit the patient is at the point of diagnosis and how advanced the disease is at that point are important factors when comparing the outcomes achieved by different clinicians and healthcare settings. But such data should be anonymised or pseudonymised wherever possible to avoid identification of individual patients.
One can also get a lot more out of data if information about the patient can be linked to healthcare activity and outcome information; this requires different systems to talk to one another, which is particularly important in end-of-life care. But this is where the NHS currently falls down. However, I was pleased to learn from a recent briefing by the NHS Confederation, which represents private healthcare providers, that steps are being taken to integrate their datasets with those of the NHS; this will mean patients and the NHS can get a full set of information in one record. On a point made by the noble Baroness, Lady Rock, I was told recently by Simon Stevens that the NHS is no longer the world’s biggest purchaser of fax machines; he was rather indignant when I mentioned that.
There are many examples of where data can be used successfully to improve patient services. Some studies have also been able to motivate settings to improve their track record when linked to payment incentives—a sort of payment by results. This was done as a result of the National Hip Fracture Database. A number of notable national reviews have had tremendous effects on outcomes—such as the National Review of Asthma Deaths, which shockingly found that that a quarter of deaths resulted from inadequate care—which can then be addressed. The Sentinel Stroke National Audit Programme included patient input to help improve services resulting in the establishment of the very successful hyper-acute stroke units in London and Manchester, a model now being copied across the country.
One issue that concerns me is the amount of data available to the patient and how it could help patients to manage their own healthcare. We cannot expect patients to engage with doctors in taking steps to manage their own condition if we do not give them feedback about whether changes they make in their lifestyles result in better health. For example, I would like to know the exact readings for the good and bad types of cholesterol in my own blood tests, so that I can see whether my lifestyle changes are helping. When I asked the question, I was told, “It’s fine—keep on with the medication”. That is no help to me when I am trying hard to get to a position where I do not need the medication at all. I agree with the frustrations of the noble Baroness, Lady Neville-Rolfe, on this matter. Like her, I think we should be able to see our own medical records; we should be able to trust the patient with them.
I also look forward to the day when, living in Wales, I will be able to make appointments and ask for repeat prescriptions online, as my relatives in Scotland already can and my relatives in England will be able to next year. That, however, will require a major step forward in technology, which I do not see on the horizon.
This morning I came across a perfect example of how data can help to improve services. I hosted a round table at which we heard about research into the issues relating to local authorities missing targets for chlamydia screening. Chlamydia is an increasingly common sexually transmitted disease, which can cause major health problems including infertility. There have been several changes, and indeed reductions, in the funding for this screening. Initially the money went to local authorities, which are responsible for public health, as a dedicated grant, and then it became integrated with other funding. Finally, the funding has now dried up altogether and the National Chlamydia Screening Programme simply monitors how well targets are being met and supports local authorities. Unsurprisingly, the targets are not being met, following a year-on-year decline. In 2017, only 20% of commissioning councils achieved the Public Health England target of 2,300 annual diagnoses.
The research that I heard about this morning was qualitative. It sought to collect data on various aspects of the difficulties that councils face with a view to proposing how things can be improved. It turns out that, although funding is a significant issue, public awareness is one of the greatest barriers that councils need help with. They would like more national resources to help them develop local marketing programmes to let people know about the dangers of chlamydia and about the screening and services available to them locally. They also need technical help with targeting the most at-risk groups. I thought it was a good example of where digging deep into the data can help to improve services. I am pleased to know that Public Health England is soon to publish a review on this and all other sexual health matters.
So my questions for the Minister are as follows. What progress is being made on integrating patient data from all health and care settings and making the records available to patients? What measures are being taken to give patients trust and confidence in their data being properly handled? How will applications for outside use of NHS data be handled and against what criteria? Finally, is funding being passed to the Welsh Government to enable patients in Wales to benefit from the technological advances that are already available in Scotland and are soon to be available in England?
My Lords, first, I need to declare an interest as a member of a clinical commissioning group, which also happens to cover the Royal Free.
I congratulate the noble Lord, Lord Freyberg, on the timeliness of this debate. I just wonder whether the Secretary of State chose this date to make his announcement about investment in NHS data and technology, as it allows the Minister here to tell us about the NHS’s plans. There is a nice congruency about that.
It is all for the Minister’s benefit. I am grateful to the noble Lord for introducing this debate. I completely agree about its importance and urgency and about the action that needs to be taken with regard to NHS data. I congratulate all noble Lords who have spoken. It is a great example of the House of Lords’ consideration of a matter of national importance.
I particularly congratulate the noble Lord, Lord Bethell, on his maiden speech. With his deep political and historical background, I look forward to—I am trying to find the right word to describe his inheritance—some contraryism. That is one word that might be used, and I look forward to seeing the effect that it might have on his own Benches and indeed on the House. I welcome him to his place.
My noble friend Lord Hunt eloquently outlined the dilemma and conundrum that we face in the use of data. The noble Lord, Lord Kakkar, gave us a brilliant illustration of the usage and benefits of NHS data to be found, in his case, at the coalface of patient care and the research agenda. My noble friend Lord Mitchell —I call the noble Lord “my noble friend”—was quite correct about the need to maximise its value to the NHS and to patients, the point about maximising being very important. My noble friend Lord Stone, as usual, gave us practical examples and applications.
The noble Lord, Lord Macpherson, brought to mind a recent sad experience that I had involving a relative. Her records were not available to the paramedics in the ambulance that picked her up, so “Do not resuscitate” did not flash up on the screen, with really sad consequences. My response was to ask whether you have to tattoo “Do not resuscitate” across your forehead to make sure that, when the time comes, the records are available to whoever needs them at that point. That is a very good example of the need to get this issue right.
I thank all the organisations, as well as the Library, which sent us briefings and which helped greatly with our understanding and appreciation of the importance of this issue. I agree with the noble Lord, Lord Freyberg, about the necessity of a national strategy, and I found his speech both profound and very pointed. I think he is kind when he says that the Government are not quite asleep at the wheel. I am not quite so optimistic and I want very briefly to look at the politics of this.
I fear that the antipathy that some members of the party opposite have towards public policy-led national strategies and the conviction among some of them that NHS fragmentation was a good thing and that the private sector inroads into it are having a significant impact are potentially not a good combination in this context. I say that because I absolutely do not want NHS data silver sold off for large businesses to use because of our ignorance and a political conviction that that is the right thing to do. We might then find that it gets sold back to us because we need to use it in our NHS.
Patient data is a fundamental resource for improving patient care and it underpins the ability to deliver high-quality care and improve the standards of healthcare providers. National comparative data is a powerful tool in exposing pockets of poor care and allowing resources to be focused on poorly performing areas. With a growing focus on understanding variations in the quality and efficiency of clinical care, on improving patient safety and outcomes, and on more transparent data, national clinical audit is a key tool in supporting these agendas. Therefore, it is important for patients on a personal level and for the national well-being. It ranges from basic matters—I am very grateful to the Deb Group for explaining the analytics that it uses to improve hand-hygiene compliance in our hospitals and healthcare facilities—to the work of, for example, NHS Partners Network, which is part of the NHS Confederation. I was grateful for its briefing because it talks very sensibly about the need for NHS Digital and the Private Healthcare Information Network to talk to each other. However, what concerns me is how the governance of that works and how it fits into the issues that we have been talking about this morning.
It is also worth saying that many of us have received a briefing from Future Care Capital. For noble Lords who have not engaged with its briefings, I thought that it might be worth explaining what that organisation does. It is a charity that uses evidence-based research to shape future health and social care policy. It began its life in 1945 as the National Nursery Examination Board and it evolved, as many charities do, into something quite different over 70-odd years, but it continues to have royal patronage. It is asking us to reflect on the great data asset that we have in our 70 year-old NHS. I say to the Minister that we need to look at its proposals and take them seriously.
I should like to summarise with a few questions for the Minister, many of which have already been asked. Will the Government agree to develop a national strategy and action plan to harness the value of NHS-controlled healthcare data? How will the Government engage the public—many noble Lords have mentioned this—in building confidence in the use of their data and harnessing the value of their healthcare data to deliver better outcomes for society? What measures will the Government put in place to prevent the leakage of both social and economic value from healthcare data-sharing with third parties—in particular, corporates headquartered in other countries? That takes me back to the noble Lord, Lord Macpherson, who was quite right to say that you should follow the money. In my view, we should definitely be following the money here.
Do the Government support the principle of harnessing healthcare data on a commercial basis and, if so, what ethical safeguards will they put in place to maintain public trust in sharing NHS controlled data with third parties? Would it be a good idea to value the healthcare data that the Government control and perhaps include that valuation in the Chancellor’s balance sheet? What would that look like? What is the Minister’s view about the creation of a not-for-profit national body which can then ensure that the value of our healthcare data and its IP flow into this country and not out of it?
My Lords, I congratulate the noble Lord, Lord Freyberg, on calling this debate and on his passionate interest in the topic, which he often shares with me by email and through other routes. His excellent speech was, indeed, a tour d’horizon, as the noble Baroness, Lady Walmsley, said. I am also grateful to him for sharing the moving story of his sister—the unavailability of data obviously contributed to her untimely death. Her case gets to the heart of what can sometimes be a rather technical topic. At the end of the day, we are trying to make sure that people are able to live longer and happier lives. The noble Lord’s sharing of that story really brought that point to life.
I also warmly congratulate my noble friend Lord Bethell on his outstanding maiden speech. He brought to life the anxieties that people feel about big data—the saliency of this topic is clearly rising with Facebook, Cambridge Analytica and so on—while discussing the extraordinary benefits. I have no doubt that he will be a huge asset to this House. He is someone I have known and worked with over the years. We may be getting a bit longer in the tooth now, but at one point we were thrusting, reforming young Conservatives. We are, in this House, young Conservatives again. I am sure he will bring exactly the same energy that he has always brought to reforming issues.
I thank noble Lords for a superb, high-quality debate. It has also been an extremely fertile ground for new ideas, some of which we are happily moving ahead on, and others of which I will, as ever, reflect on. All noble Lords agree that the NHS is already a world-class and comprehensive healthcare system. We also agree that it provides a unique opportunity, because of the circumstances of its founding, to bring together an unrivalled longitudinal dataset on the health and care of over 60 million people alive today. As the noble Lord, Lord Freyberg, and my noble friend Lady Neville-Rolfe reminded us, the use of that data over time, going back not just decades but centuries, has led to countless innovations and saved millions—possibly billions—of lives worldwide. As the noble Lord, Lord Scriven, and my noble friend Lady Rock pointed out, the potential gains from this dataset with the technologies at hand are enormous: improving standards; making the health system fairer, safer and more effective; and improving research so that patients benefit more quickly from medical breakthroughs.
The noble Lord, Lord Hunt, was right in saying that first and foremost it is about the transformation of direct care. The primary uses of data must come first and secondary uses second. Patient outcomes are the most important goal. It is also the case, as the noble Lord, Lord Kakkar, pointed out so wisely, that without technology we cannot achieve the goal of personalised medicine. Personalised medicine is essential, because we now understand so much about disease that no disease presents itself in one person in the same way that it presents itself in another. We cannot achieve that goal without technology and the use of data. As the right reverend Prelate, the Bishop of Southwark, and my noble friend Lady Redfern pointed out, it is also critical in overcoming some of inequities and discrepancies in health outcomes that clearly exist in all disease areas today.
Noble Lords have raised many examples of the benefits of data sharing. My noble friend Viscount Bridgeman explained the benefits that derive from GP databases in England. The noble Baroness, Lady Walmsley, pointed out the role of performance data in winning the argument for transforming stroke care and rationalising services—not always a popular thing to do. The noble Lord, Lord Stone, gave the example of how healthtalk.org—I think that is the right name—is empowering self-care in improving outcomes. He also brought to life an international dimension: sharing data not just in one country, but across the world. That is really important for rare diseases. Our health charities have a very important role in this field, as he exemplified.
My noble friend Lord Suri talked very wisely about the local and regional dimension. Greater Manchester, which is often the leader in these things, has made tremendous use of joined-up healthcare records. Data has been used to build a picture of how patients with stroke are diagnosed and treated, for example. This has improved services for patients, including by supporting paramedics with diagnosis—which is not always there, as this debate has highlighted—through the development of an app to assist clinical assessment. That has led to a reduction of deaths from inter-cerebral haemorrhage by one-third in the 30 days following diagnosis. Think of the benefits to health and wealth that would accrue if we were able to roll out these innovations UK-wide and worldwide.
Yesterday, at NHS Expo I met several innovators, including those who are providing real-time data on the availability of and waiting times for urgent and emergency care centres in Kent, with the goal to go nationwide. Others were rating and promoting the best health apps, so that people can take more control over their care. These are just a few examples of what is possible.
We can all be zealous about the benefits of sharing data but, as noble Lords have pointed out, we have to be aware of the anxieties and concerns that people have, not least because of the recent history in this area, when we have tried to make progress. My noble friend Lord Suri pointed out that we stand at a golden age. I think he is right, but we will only realise that golden age and its benefits, which were brought to life by the noble Lords, Lord Macpherson and Lord St John, and my noble friend Lady Neville-Rolfe—with the challenges we face, we cannot have the luxury of doing without these benefits—if we appreciate people’s concerns about how data is used, whom it is shared with and whether it is safely, properly and legally used. People want to understand and have a say in how their data is collected and used. They want to see the benefits being realised for patients and for the health system more widely. I will return to this topic.
KPMG published a report yesterday showing that the NHS is the most trusted institution in the country with whom citizens are prepared to share personal data. That is a very precious thing which we must not put at risk. If we do, we will not be able to realise the kinds of benefits that we have been discussing. The first step is to keep data safe, as my noble friend Lord Suri pointed out. Since May 2017, when the WannaCry attack happened, we have invested more than £60 million in cyber resilience for local health trusts. We are planning to invest a further £150 million over the next two years to improve our ability nationally and locally to prevent, detect and respond to cyber incidents. Of course, we can never say never about these attacks, and they are becoming more frequent and more severe, but we are aware of the importance of putting in that resilience.
We have also introduced a national data opt-out which gives patients a choice about how their confidential patient information is used beyond their direct care. I take the point made by the noble Lord, Lord Hunt, about how challenging it is to exercise the opt-out for children. We are in the process of addressing that at the moment. The opt-out is in beta form before going live in October. I am pleased to tell noble Lords that, as well as NHS Digital, Public Health England is upholding the national data opt-out and we will be rolling it out to all NHS organisations over the next two years.
The noble Lords, Lord Scriven and Lord Hunt, and the noble Baroness, Lady Walmsley, talked about the importance of this issue and of engaging with the public and stakeholders. I want to use this opportunity to highlight and commend the work of the Wellcome Institute’s Understanding Patient Data initiative. It has produced remarkable resources and we have been working closely with it. It is helping us to win the argument with people that they ought to share their data because of the benefits that will accrue to themselves and to those whom they love. However, we can never think we have won the argument. It always needs to be made and we always need to provide that reassurance.
We are taking other actions. My noble friend Lady Neville-Rolfe mentioned the National Data Guardian, which we are putting on a statutory footing. We have implemented new data standards that she recommended. We have been explicit about not selling information, or access to information, on patients to marketing or insurance companies. That is a big concern. I can tell the noble Lord, Lord Scriven, that we have taken some important steps on governance, such as introducing Caldicott guardians—named after the first National Data Guardian—into the information governance framework, and trust board responsibility for the safe use of data.
Once we have addressed the safety issue, we will then need to start bringing together the available data. As noble Lords have explained during the debate, so much health and care data is still fragmented, often stored and transmitted in paper form and not easily shared. The horrifying consequences of this, such as key information falling through the gaps, have, unfortunately, been brought to life in the cases of the loved ones of the noble Baroness, Lady Thornton, and the noble Lord, Lord Freyberg. As my noble friend Lady Redfern pointed out, medication error is a consequence too. The noble Lord, Lord Kakkar, talked about a clean and curated dataset being useful not just in its own right but because of the value it would generate. He is absolutely right on that topic.
We are making progress through the global digital exemplar programme, for which my right honourable friend the Secretary of State announced today £200 million. The noble Lord, Lord Macpherson, will know that it is very unusual to announce new money outside spending reviews, although the Government have announced £22 billion over the next five years. However, this is a rollout of a £4 billion investment, which no doubt he was involved in agreeing at the last spending review. Let me reiterate that that is a £4 billion investment in technology in the NHS.
We are also looking at joining up data across different areas and settings. This has been highlighted by many noble Lords. We have launched the local health and care record exemplars, which is about creating common standards of interoperability so that data can be shared, not just through health but, critically—a point made by my noble friend Lady Redfern—across social care and local authorities as well. Therefore, wherever you turn up in the health system, your record will be at hand. As of now, through the NHS app, you can find your summary healthcare record in digital form. However, the exemplar programme is about your entire care record, which is critical for the reasons that we have discussed. The goal, in time, is that everybody—not just healthcare and care professionals but individuals themselves—will have near real-time access to the information that they need, wherever it was captured, to help them make the best clinical decisions.
As well as digitising the information that we have, we also need to make sure that new forms of information are added to those data records. Here, I would like to highlight the potential of genomic medicine and genomic data. Our work in this area is a shining example of partnership between the public sector, the life sciences industry and the research community, working together to benefit NHS patients. Through the 100,000 Genomes Project and the new genomic medicine service, which launches in October, we will sequence genomes for patients with rare diseases and cancers so that they can receive more personalised treatments and benefit from improved outcomes and reduced adverse drug reactions.
Several noble Lords, including the noble Lord, Lord Scriven, the noble Baroness, Lady Walmsley, and others, said that we need to make sure that we can harness data generated by patients through wearables and information about other aspects of their lives that may have a health impact, such as housing, as my noble friend Lady Neville-Rolfe pointed out. As the noble Lords, Lord Scriven and Lord St John, pointed out, that takes us to a very interesting, fundamental question about who owns the data. In my view, it is about co-ownership and having a joint record, which everybody contributes to but which is jointly owned. That reflects the collective nature of the National Health Service. However, the noble Lords are absolutely right that we have to settle that fundamental question.
We will clean up the data and then start adding more data to it. Then, we need to add the analytical capacity that will unlock its potential. This is where we get into the realm of artificial intelligence. AI can transform prevention and improve diagnosis and the treatment of disease. As the noble Lord, Lord St John, pointed out, it can improve cost-effectiveness. Its impact will be profound, as my noble friend Lady Rock said. As we have heard, it is already transforming diagnostic imaging, and, through investment made in our life sciences industrial strategy, we are investing in a network of digital pathology, imaging and AI centres of excellence across the United Kingdom. However, as my noble friend Lord Suri and the noble Lord, Lord Macpherson, pointed out, it is true that we lag behind other industries. We need to go faster. We are now coming to the thorny issue at the heart of this: we need to make sure that the benefits of applying AI to NHS data are fairly distributed.
It was a pleasure yesterday to be able to announce our initial code of conduct for data-driven technology, which sets out the principles of how these kinds of partnerships should work. They describe our expectations on data governance and commercial agreements, about which I will say more in a minute, and provide a basis to deepen the trust between patients, clinicians, researchers and innovators. Our goal is to create a safe and trusted environment in which to encourage innovation.
I would like to highlight quickly two things that will be critical to delivering that. First, digital innovation hubs will provide a safe, secure, legal opportunity for innovators from the public sector, academia and the private sector to access patient data to test algorithms and new products for research purposes in a way that delivers the very highest standards of probity. Secondly, as the noble Lord, Lord Kakkar, pointed out, we need to talk about having the right regulation. I have asked the NHRA, which is an outstanding regulator, to look at how we can provide a framework to encourage the regulation of digital health technology from the point of view of safety and efficacy, as we do not yet have that.
On the topic of commerciality, we know that data in the NHS is a crucial national asset with huge value. Making it available for research will incentivise the life sciences sector to locate in the UK, which is something that we all want. The noble Baroness, Lady Thornton, was unwarrantedly pessimistic about the potential of these public/private partnerships. They have existed for decades between the pharmaceutical sector and the NHS, which has offered data through clinical trials and other means. This, of course, is about taking it up another level. We need to make sure that these partnerships develop, but that they do so in a right and proper way and that the NHS gets a fair deal.
That is a point to which I will return. I recognise absolutely the concern voiced in this Chamber and in debates elsewhere about making sure that the NHS gets a fair deal.
We have heard from the noble Lords, Lord Mitchell and Lord Freyberg, about Sensyne Health. One of our own number, the noble Lord, Lord Drayson, founded this company, which has taken an interesting attitude while working with lots of university hospitals and trusts. It has both shared equity in the company with those trusts and given them royalties for algorithms built on the data that it holds. For me, this is a step change in how we conceive of data as being not just a service rendered but a form of capital invested. As we work to create more guidelines on the right kind of commercial strategy—and I reassure noble Lords that we will work on that over the autumn—these must recognise that people view data more like a form of capital, and therefore the commercial arrangements need to reflect that. Having said that, we also need to provide a degree of flexibility. The noble Lord, Lord Macpherson, explained the difficulty sometimes not just in valuing this data—we are engaging in that Treasury exercise—but in making sure that the right arrangements occur between the public sector, the private sector and academia.
If I may, I want to take issue with something that the noble Lord, Lord Mitchell, said about the difference between “maximised” and “fairly”. We are slightly dancing on the head of a pin here, and I will explain why. Of course we want to maximise the benefits to the NHS, both directly through value sharing and, down the line, in the development of new technologies and treatments. Equally, as is the case with oil, if you ask for too high a price, people will not buy it and there is nothing to share. Therefore, when I talk about fair distribution, it is about making sure that we maximise the benefits and that the role of the NHS’s contribution in the creation of maximal benefits for health and wealth is recognised fairly.
I am interested in the noble Lord’s idea of a sovereign health fund. He and I have discussed that previously and I want to consider it more. However, it is a fair criticism that we need to improve the commercial acumen in the sector. Some ideas have been mentioned, including the creation of a technology transfer office or similar for the NHS, and we are certainly considering that.
I want to very quickly touch on the issue of skills, which was raised by the noble Lord, Lord Kakkar. We have asked Dr Eric Topol to lead a review on changes in technology and new developments to make sure that we have the right skills in the NHS. He will publish his final report by the end of the year, and that will feed into the long-term funding plan that we are developing.
We know that the NHS has a huge asset in its hands. People have bequeathed a precious gift to it and we have to get the maximum benefit from it. At the same time, we need to bring people’s trust and provide reassurance at all times. As the noble Lord, Lord Hunt, said, it is a fine balance—a line that we need to tread. The Government are very conscious of that. Things are moving quickly; we need to move quickly as well. That is why this debate has been extremely useful both in raising the salience and highlighting some of the issues but also, as I said, in providing a ground for new ideas.
Many noble Lords asked whether we will have a strategy. They will know, have seen and it has been mentioned that we have a new Secretary of State. He is not just a technophile but I believe was actually a coder at some point in his life. I reassure noble Lords that not just embedding technology but realising the potential for value and making sure it is maximised and fairly distributed will form a core part of the long-term plan we are developing. I look forward enormously to working with all noble Lords in this House who have contributed to this debate and elsewhere to make sure that we are able to achieve that goal.
My Lords, I thank all noble Lords who have spoken today. It has been quite an excellent debate and I have learned much from it. I echo other noble Lords in congratulating the noble Lord, Lord Bethell, on his excellent maiden speech. He emphasised serious points about the fears that individuals have about their data and how it is used—which I share—but also its benefits. I thank him for his fascinating contribution. I also thank the Minister for the way he has engaged with and embraced this subject. I know he shares a passion for shaping this area to derive maximum public benefit in a socially acceptable way. However, while I recognise that his code of conduct is welcome, in reality it is fine words with no delivery teeth. Without a competent central resource to support the trusts in commercial negotiations on data, they will be steam-rollered. I therefore look forward to engaging with him to prevent that.
As I listened to noble Lords, several themes emerged. If I were to highlight one it would be that making this data resource do what we hope it will do will be hard won. The records are fragmented and incomplete, considerable investment is required to make the data useful, the skills to do this well are scarce and the politics of medical data are challenging. My noble friend’s analogy of North Sea oil in the 1980s seems apt. I therefore call on all sides of this House to engage in this debate and create consensus on the core principles for such a policy.