Health and Social Care Bill

My Lords, I rise to speak to Amendments 40A and 199ZA in my name. I also want to comment on some other amendments in this group. I speak as a one-time medical researcher, a trustee of a number of medical research charities, and as a scientific adviser to the Association of Medical Research Charities. In that I work closely with my friend, the noble Lord, Lord Willis. Research, as we have heard, is not an optional extra. It cannot be added on to the NHS as and when someone thinks it is needed; it is a vital and integral part and it is good to see an acknowledgement of that in the Bill, even if it falls a little short of full endorsement. Research is no cottage industry, with more than £1 billion coming from the research charities every year and almost the same amount going in from each of the Medical Research Council and the NIHR. That is a total of around £3 billion a year. As for the Department of Health’s contribution of almost £1 billion, I want to say how much Dame Sally Davies's role in securing that is appreciated, as indeed is that of the noble Earl who has been a great ally. However, Amendment 42 raises the question of whether this funding is secure for the future. I can only re-emphasise what the noble Lords, Lord Willis and Lord Warner, have said. Even though research funding amounts to less than 1 per cent of the NHS budget—a pitifully small proportion in an organisation of this size—can we be reassured that it will not fall easy victim to the cuts we are going to see over the next few years? Is it really essential for this to be distributed through the Commissioning Board? Is it possible that it could come more directly via the Department of Health? I hope that the noble Earl will give us some comfort on this amendment. This is clearly of some importance and we almost certainly will have to come back to it at a later stage. As we have heard, medical research in the United Kingdom punches way above its weight. By any measure, our outputs of research findings come high in any international league table and the fruits of our research are having a major impact on our health. We are living longer and healthier lives and one has only to look around your Lordships’ House to see evidence of that. I suspect that there are few of us who are not taking one or more pills, keeping us in fine fettle. As the noble Lord, Lord Willis, said, the public at large is well aware of the benefits. According to a number of surveys, more than 90 per cent of patients and the public want us to do this research and, furthermore, want to be engaged in it as patients. They want this even if it does not benefit them directly but benefits only future generations. However, they also know that any patient who is part of a trial incidentally gets a better deal and better care as part of the research process. They are enthusiastic supporters but that is not the only reason why we should be supporting research. There are considerable economic benefits too. The most recent of several studies that have shown this, Medical Research: What's it Worth? supported by the Rand Foundation and the Wellcome Trust, clearly showed that we gain between 35 and 40 per cent return per annum for every pound we put in. Although it takes several years for research done now to bear fruit—today it is coming from research done some years ago—the returns come from less sickness and absenteeism from work, greater productivity and less sickness benefit payments. Research is a good thing all round and this Bill is a great opportunity to make sure we gain its full benefits. Amendment 39 emphasises the need for the Secretary of State to take his expressed desire to support research seriously and I strongly support that amendment. Amendment 199ZA, in my name, brings the same pressure on to the clinical commissioning groups and alters the wording in exactly the same way. It is at this level where I fear we have seen one of the biggest obstacles to promoting clinical research up to now. The same survey I mentioned earlier showing that patients are keen to be involved in research also showed that GPs by and large were antipathetic and at best uninterested in research. Few GPs engage in research directly themselves, but that is not the main problem. It is their unhappiness at having to spare any time, for example, in seeking the approval of their patients for them even to be approached by researchers and asked for their consent. Researchers have to ask patients for consent but can do so only if the GP asks the patients for them first, and they are not at all keen. They say that there is not enough time. Yet their role is critical, not only to facilitate clinical research performed by others but to be responsible, through the CCGs, for commissioning those extra support costs that arise when research, funded by charities, the MRC and so on, is carried out. Research on patients supported, for example, by the British Heart Foundation or Cancer Research UK, often results in additional costs due to extra visits or more routine blood tests. Traditionally these should be funded by the commissioners of services. This Bill provides just the opportunity we need to make sure that those at the coal face, responsible for commissioning, can facilitate and fund this research. I hope the Minister will consider the need to accept this or a similar amendment and examine how we might provide the inducements necessary to GPs and CCGs. A failure of CCGs to take on responsibility for creating the right environment in which we can gain the full value of external funders will be damaging. I come now to the difficult issue of the use of patient data. How can we make sure it is possible to use clinical information about patients for research purposes? New Section 14X, to be inserted by Clause 23, describes the duties of clinical commissioning groups to promote research and includes the need to promote the use of evidence obtained from research for improving the health service. That is very good, but it says nothing of the other way round; of how we can use patients’ data for research purposes. The amendment in my name, Amendment 199ZA, emphasises this point. The difficulty has been well rehearsed: how does one gain access to identifiable information about patients for research into their diseases while at the same time protecting their confidentiality and giving them all the reassurances that they need? It so happens that well over 90 per cent of patients are happy for information about them to be used for research, but the current system of safeguards goes well beyond the requirements of the Data Protection Act and is stifling much important research. When data about patients are fully anonymised—a horrible word—and it is impossible for anyone including the researchers to identify a patient, then there is little or no trouble. However, when it is necessary for the researchers to know who the patients are, we get into problems. If, for instance, a researcher needed to use the cancer registry to look at whether patients with a given cancer were subject to some factors in their environment—for example, whether they lived near electricity pylons or some hazardous waste plant—then they would need to seek consent from each patient. But what if many have died in the mean time or are untraceable because they have moved away or gone abroad? It becomes impossible to do the research. The National Information Governance Board was set up for this purpose, but it is no more. I know that the Government intend to try to help with this now. I know that as a first step the patient information leaflet produced by the UK Clinical Research Collaboration, explaining how data about them can be used, has gone out to GP practices in Scotland and soon will be sent out in England and the rest of the UK. That is an excellent start. The Clinical Practice Research Data Link has also been set up, but I wonder whether the Minister can say how far we have got with that? Will it achieve what is needed: the rapid access to data for researchers with the approval of patients? Meanwhile this amendment seeks to flush out the need to address this hurdle to some important research. Amendment 41 brings up the important issue of funding for public health research. Here I speak as a former chairman of the Public Health Laboratory Service, the forerunner of the Health Protection Agency, which is also disappearing. I cannot speak too highly of the marvellous work it did and does in protecting the public’s health. It is a fantastic organisation. It works on outbreaks of food poisoning, epidemics of flu and immunisation programmes against a whole host of infections, to say nothing of its work in radiological protection and on all sorts of biohazards. The point is that this organisation is at the forefront of its field and is the envy of the world because it is able to do fantastic world-leading research. It is highly dependent on a continuing research effort to keep ahead of the infections and other hazards that are continually evolving. It is vital that it continues to have access to research grant funds, particularly external grant income from the whole range of potential funders to which it has access now, such as the Medical Research Council, the Wellcome Trust and so on. I hope the noble Earl will reassure us on this. His Written Answer to the noble Lord, Lord Willis, yesterday did not give any confidence that the Public Health Laboratory Service will be able to apply to external bodies for funding. Then there are the directors of public health and their teams. They, too, should be enabled to conduct high-quality research. The amendment makes that clear. How will they receive the necessary support and encouragement when they transfer into the local authorities? It is not at all clear that local authorities are keyed into this, so some reassurance on this point would be helpful. Most of these amendments are probing—I think they all are—and seek simply to gain a greater understanding of the ways in which I hope the Government will support the research effort.