NHS: Healthcare Data

Baroness Thornton Excerpts

Thursday 6th September 2018 Lords Chamber

[Baroness Thornton (Lab)]

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.

[Noble Lords]

Oh!

[Baroness Thornton]

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?

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O'Shaughnessy) (Con)]

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 the 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.

[Baroness Thornton]

I absolutely accept what the noble Lord is saying, but the record so far of the NHS’s business acumen has not been great.

[Lord O'Shaughnessy]

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.