(4 years, 10 months ago)
Lords ChamberMy Lords, I too welcome the Bill. Like many noble Lords who have spoken before me, I think that the concept of keeping people safe by having a safer health service system, and implementing learning to improve safety, is to be welcomed. However, I wish to raise some issues within the Bill. Noble Lords have already raised some of them but there are one or two in particular which have not been raised so far, and which I want to bring to the attention of the Minister.
The noble and learned Lord, Lord Judge, has already stated clearly that the powers in the Bill are quite wide. In some respects, they make Henry VIII powers look quite narrow. The Bill is constructed in a way that allows the new organisation not only to set its own homework but to do it, then to mark it and be the sole judge of whether it was the right homework in the first place. We therefore need to look at the Air Accidents Investigation Branch and how the Civil Aviation Act 1982 gives a framework for independent investigation, rather than it being more or less carte blanche. You cannot have independence with such a total lack of framework. As we go through the Bill, in the great time that will be available to us in Committee, we should look at whether the framework needs to be a little narrower rather than having such broad powers as the board deciding what triggers an investigation, what the criteria are, who can be brought in and how it should carry out the investigation. We need to be a little sharper and crisper on this.
One issue that I wish to raise regards Clause 5, and the healthcare provided in Crown interests. The noble Baroness, Lady Finlay of Llandaff, touched on this. A patient’s journey is not determined just by the fact that they are being treated by the NHS. If you are a prisoner seeking equivalent healthcare in a prison, then to be honest quite a bit of the care that you receive will not depend on the NHS. If there are no prison guards available to transfer you or, in the same way—because there is a power relationship—if you are not able to raise concerns, these are real issues. The Bill has been written specifically through the prism of health and NHS professionals. That is understandable but the context of where healthcare is given, particularly when it is meant to be equivalent, on a Crown estate means that the Bill has to go much wider.
I think it is Clause 7 which refers to listed persons, but they are all to do with health. There is nothing to do with the Prison Service or the Ministry of Justice, which will be as important as healthcare providers in terms of where healthcare is provided. How have the Government looked at the contradictory legislation which will create problems in places such as the Ministry of Justice, for example on data sharing? There are four levels of data sharing within the Prison Service and health, some local and some national, but there are also rules which the Ministry of Justice is bound by on the use of data which contradict things in the Bill. We need to be much more joined up on how this is done. As I say, there is a real power relationship here between a prisoner and their family and their healthcare. We need to think through the different levels of how investigations will be carried out and have safeguards, particularly for patients and families, in the places where that kind of power relationship happens.
I want to come on to the issue of the independent providers, as other noble Lords have done. The Minister gave her view, right at the beginning, that the Paterson review is the reason for this provision not being brought into this Bill. Let us be clear: the Paterson review is a non-statutory investigation into things that went wrong in the independent sector, and it will make recommendations on what might need to change in that sector. It has nothing to do with independent investigation on a non-blame basis about how future investigations in the private sector will continue. That is what this Bill is about, and the two things are completely different.
I find it unbelievable that a person who is treated in a private sector hospital whose care is NHS-commissioned somehow has a right to different levels of safety, and somebody in the next bed whose care is non-NHS-commissioned does not, within the same institution. It is nonsensical. The provision has to be for both private and NHS patients. Surely this Bill should be about patient safety, regardless of who is commissioning or providing the care. That should be a central tenet.
I am the 10th speaker, and I am surprised that no one has raised the subject of social care: where is it in all this? I refer the House to my interest in the register as a vice-president of the Local Government Association. Thinking about the route and the complexity of care, this is about not just NHS care but social care as well. If an individual is receiving both social care and healthcare, which are meant to be integrated in a care package, what role will this body have to look at issues in social care that have led to a lack of safety? How will such recommendations be looked at? Will safety and the subsequent reports be looked at comprehensively? Will this body have teeth when it comes to social care?
I support what my noble friend Lady Parminter said about the PHSO, the ombudsman. Let me be clear: trust in this organisation means trust among staff who work in the health service but among patients and families as well. The two should not be ranked to make one more important than the other. As the Bill is written, this organisation is the author of the homework and the judge of the homework, but trust will fall down if, where something has happened to an individual, the PHSO is not able to get to vital information. There will be contradictory recommendations and results about what has happened; one systematic and one about the patient. There will then be a breakdown in trust. There is clear guidance already on the use of data between public bodies. There is also the issue that, on many occasions, the PHSO uses anonymised data to be able to come to conclusions. If this is to be a last resort for patients and their families, we need to look again at the way in which the PHSO can access data from the safe space.
My final two issues come back to what a number of noble Lords have said. It is all right having reports and recommendations, but their implementation within the NHS is renowned as being complex because there are so many organisations. I am not clear how this will be audited and its implementation checked. I come back again to how the Bill is written. Some of the recommendations and their implementation will be on the NHS, and all the bodies listed in Clause 28 as having a duty of support are NHS bodies. No bodies are listed that are not NHS, such as social care bodies or the Prison Service, but they will need to implement changes. However, as the Bill is drafted, this new body has no role in supporting them in that implementation. What will be done to ensure that this body can look at organisations beyond the NHS that are vital in addressing the systematic failure in patient safety?
Finally, and I will be very fast on this, I want to reiterate a number of issues. As a former NHS manager and as a patient in the NHS, I am indebted to clinicians, but clinicians have one view of the world. This is not to deride that—their training and their view of things leads them to a certain way of looking at issues and they use their expertise in that—but the non-executive directors have to be a broad range of people. It comes back to trust. Patients, clinicians and even some people who are not within the health service spectrum can bring their expertise to this. We need to think a little more broadly about who the non-executive directors will be.
As I said, I welcome the thrust of the Bill. It can and will contribute to patient safety, but there are issues that have to be thought through. If they are not, the body will not be able to produce the reports, and the NHS—or should I say healthcare and non-healthcare settings where healthcare is provided—will not implement the changes that will mean patients will be safer.
(5 years, 4 months ago)
Lords ChamberThe social media companies accept that they have a responsibility to deal with anti-vaccination misinformation, harmful information relating to eating disorders and general health-related misinformation that can be found online. The Health Secretary has been clear with social media companies that they are expected to address these harms. The Department of Health looks forward to working with them on it. My noble friend is right when he says that our levels of vaccination are extremely high compared to other countries’, but we must not be complacent and must ensure that we not only maintain the current vaccination rates but drive them further and do not tolerate any further permeation of the pernicious anti-vaccination messaging which is starting to leak out online.
My Lords, the approach being taken is welcome, but in itself probably will not be enough. We cannot ban and regulate everything that goes on on the internet. For example, a blogger who may have nothing to do with health may have 80,000 to 100,000 followers and may blog about a health issue, and that becomes fact. What is needed in the modern world is alternative narratives; that is what is seen on social media. Rather than just using statutory websites and web pages, what is the NHS doing to adopt a much smarter, blogging/lifestyling approach—involving those who influence young people and who use these media outlets—and to use effective alternative narratives that work, rather than just putting all its eggs in the banning approach basket?
I do not have access to the statistics now, but I know that a lot of research has gone into assessing the amount of peer-to-peer support young people access online from medical charities and other charities via social media routes, or other online routes such as blogs or influencers who engage very effectively with various different medical charities. There is some very encouraging evidence that social media can be used in this way to direct people to the help and support they need, if it is used effectively. As the noble Lord says, we must be very careful not to throw the baby out with the bathwater and must produce alternative narratives to direct young people and vulnerable people to access the support they need in the most effective way. This is done very effectively by many organisations. It is a matter of making sure that, wherever possible, young people and vulnerable people are protected as much as possible from harms that they really should not be exposed to.
(5 years, 9 months ago)
Lords ChamberOf course, I am very happy to. In this case, it is good news that diagnoses are going down because 92% of people with HIV in the UK have been diagnosed. The UN target was 90%, and we have exceeded it. That leaves 8% to reach and, clearly, we want everyone diagnosed and on treatment, with their viral loads suppressed, so that no new infections can take place.
My Lords, the importance of PrEP has been mentioned by noble Lords. The British Association for Sexual Health and HIV has shown in its survey that in the past year, in 25% of local areas there was reduced access to PrEP and in 11% of areas no access at all. What are the Government doing to ensure equity of access to PrEP across the country?
I shall certainly look into that issue. This is the largest trial of its kind in the use of PrEP, and we are determined to ensure that all 13,000 people are recruited to it, and that they are spread across the country. As I said, we have already reached nearly 10,000. I shall do a little more digging on that and write to the noble Lord.
(5 years, 9 months ago)
Lords ChamberI do not disagree with the content, in a sense, of what my noble friend said, but I think it is important that we communicate it in a way that will motivate people rather than terrify them into inaction. The difference with smoking is that there is no good or safe amount that you can smoke whereas there is clearly a good and safe amount that we can eat and drink and for sugar and salt intake and so on. It is about striking the right balance.
My Lords, while I welcome the Statement, particularly around prevention, and the use of AI, technology and data, there are two issues that come to mind. My first question is this: what regime will there be on issues related to the ethics of AI and data use? This is quite important, and there needs to be some form of regime and regulation about what the health service does there.
The second issue is on prevention. As a former health service manager, I know that hospitals are huge sunk costs, and the issue of prevention has been around for many generations. The key is how you move resources from the sunk costs in hospitals into prevention. What work and ideas do the Government have on that? It has always been the Achilles heel of prevention and dealing with hospitals.
I absolutely agree with the noble Lord about ethics. In a sense, everything that we do in this area has to pass the basic fairness test that people apply to it: is this a fair use of resources and a fair distribution of benefit? A number of programmes have been set up to support our work in this area. There is the Centre for Data Ethics and Innovation set up within DCMS. I also point the noble Lord to the code of conduct for data-driven technologies in health and care that I published at the NHS Expo in September. This is our first attempt to provide some rules of engagement on how NHS trusts or other bodies can enter into relationships with technology companies in a way which brings the maximum possible benefits to the NHS. We will do more on this in due course.
(5 years, 12 months ago)
Lords ChamberMy 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 them 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?