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NHS: Healthcare Data - Motion to Take Note

Part of the debate – in the House of Lords at 1:30 pm on 6th September 2018.

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Photo of Lord O'Shaughnessy Lord O'Shaughnessy The Parliamentary Under-Secretary for Health and Social Care 1:30 pm, 6th September 2018

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.