NHS: Healthcare Data — House of Lords, 2018-09-06
Topic: Health
Dorothea Glenys Thornton (Labour, Centre-left): 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?