Question for Short Debate
My Lords, one of the biggest problems facing a Government is how to get their policies implemented when, as always, that depends on others putting them into action. The world is full of people with bright ideas but rather fewer who can make sure that they are put into practice. Such is the case with the good intentions of the noble Earl and his colleagues to embed research in the NHS, which may be frustrated by poor take-up by those on the ground who have to implement them. But help is at hand. It is here in the AMRC’s report on a vision for implementation.
Here I express my interest as scientific adviser to the Association of Medical Research Charities. I should mention, too, that the AMRC is an umbrella body for more than 120 medical charities covering a wide spectrum of diseases, including Cancer Research UK, the British Heart Foundation, Alzheimer’s disease, Parkinson’s disease and diabetes, as well as the Wellcome Trust, and as such, speaks for a very large number of patients and their carers. They are desperately keen to see research into their diseases actively pursued to the extent that they pump £1.2 billion into research every year. It is that commitment to research that prompted the publication of this vision.
Of course, it did not come out of the blue; it came on the back of a number of government initiatives to promote research in the NHS. We have had many a fine word from Ministers, the Treasury and even the Prime Minister about the value of medical research, and we now have the duties spelt out in the mandate for NHS England and the CCGs to promote research. It makes economic sense, too, as we know, that there are excellent economic returns from investing in research—a fact that new figures that are about to be published will no doubt confirm.
Public funding of research is very successful in leveraging private capital input too. The Government’s investment proposals announced today and yesterday, including protection of the science budget and investment in health research infrastructure, including regenerative medicine, are very welcome. The scientific community is, of course, extremely pleased by that. The National Institute for Health Research and its networks and centres are poised to do great work. Couple all that with our very strong background in basic biomedical research and the fact that we have a National Health Service in which every patient is involved and available to engage in clinical trials and you have a fantastic opportunity to conduct research of benefit to patients. I do not have to explain today how research has enormous potential to improve the care not only of future patients but also of those who take part in research themselves today.
However, achieving these ambitions is not straightforward and there are several uncomfortable barriers that can get in the way. They range from the need to maintain adequate public funding—and we have had some of that today—improving and rationalising the complex regulatory network—here the new health research authority’s role will be critical—and improving taxation policy to encourage more private and venture capital investment. Perhaps one of the biggest barriers is trying to change the culture within the NHS. The AMRC’s Vision document focuses on the people who have to do the implementing—the patients, doctors, nurses and other healthcare workers. Are they ready to take advantage of the valuable basic work going on in Newcastle on mitochrondrial disease, as that becomes ready to be translated into treatments?
The report envisages a future in which, first, every patient is given the opportunity to engage in research; secondly, every health professional understands the value of research and ensures that innovations in treatment are transcribed rapidly into practice, and thirdly, the NHS as a whole conducts high-quality research and adopts new treatments. We have a long way to go because there is a very patchy, variable picture in practice now.
There is a statement in the NHS constitution that commits the NHS to inform patients of,
“research studies in which you may be eligible to participate”.
Yet despite that, a mystery shopper survey by NIHR revealed that barely 10% of NHS trusts provide patients with any information and there were very few notices about it anywhere. Another survey, by Breast Cancer Campaign and Arthritis Research UK, found that very few patients ever asked their doctors about research or clinical trials and many doctors were unaware of existing sources of information they could give to their patients. This survey also confirmed, as many had suspected, that GPs were not all switched on to doing research or even supporting others to do research. While 80% of GPs contacted felt that research was important, only 20% thought that they should be involved themselves. They quote a lack of time as a major disincentive, but equally a lack of support and a lack of information about where to get that support. This is all true, albeit to a lesser extent, of hospital doctors. Perhaps equally disturbing is the observation that only a third of GPs thought that research was of any value in helping them to offer their patients more treatment options.
There is much to do at the coalface if we are to deliver on our potential but there are causes for some optimism. The academic health science centres and networks funded by the National Institute for Health Research are enormously valuable in engaging with healthcare workers. Figures published today show that, in the past year, NIHR engaged a remarkable 630,000 patients in 1,592 studies, a considerable increase from the previous year.
Another good example is the Greater Manchester network that I visited. It has managed to get every GP and pharmacist in Salford signed up to clinical trials—to the extent that GSK has seen fit to invest heavily in trials there. It has also managed to get the rate for R&D approvals for clinical trials down from 60 days in 2011 to 17 days in 2012. Many other good examples of what can be achieved are described in this report, but there is very much more to do to change the culture more widely across the NHS.
The Vision document makes a large number of recommendations but I shall mention just a few where the Government may be able to help. First, can we encourage NHS England to appoint someone at board level who can take responsibility for promoting research, and can we make sure that the CCGs have the leadership and guidance they need to promote research? How do we make sure that non-NHS providers are encouraged to engage in the research agenda?
Then there is a clear need to spread more and better information about research opportunities to patients and doctors, so can the noble Earl encourage the NIHR to get relevant information out to NHS trusts and GPs to ensure that both patients and staff know more about research, including its benefits? He may find that he is pushing at an open door there. Can he ensure that employment contracts for consultants include sufficient time for research, and can he help to reduce discrimination against those who engage in research by ensuring that those responsible for giving out clinical excellence awards at the local and national levels take this into account by including research activities in their assessments?
Can the noble Earl reassure us that the responsibilities of Health Education England and of the local education and training boards that we are debating in the Care Bill will incorporate the specific need to include research in the training programmes of all clinical trainees? Training programmes should be flexible enough to allow time out for them to undertake research.
Can we make sure that GPs are encouraged to share their practice data with the Clinical Practice Research Datalink in a safe and secure way? Can we also encourage them to respond positively to requests to invite their patients to take part in research trials by other researchers? There has been a fair amount of resistance at that level.
Finally, dare I say that perhaps we can make the AMRC’s Vision document required reading by everyone in the NHS? After all, it comes from organisations made up largely of patients themselves.
I look forward to hearing the speeches of noble Lords and, of course, the noble Earl’s response.
My Lords, I am speaking today substantially in place of my noble friend Lord Willis, who, as noble Lords may know, had a heart attack two or three weeks ago. He is making very good progress and, in fact, is hoping to be back before we go into recess. However, he was anxious that somebody from our Benches should speak on this subject. My noble friend, as chair of the Association of Medical Research Charities, played a very substantial part in helping to develop this Vision document. Before that, as the noble Earl knows very well, he played a seminal role in ensuring that the Health and Social Care Act 2012 incorporated clauses that put on the Secretary of State and others in the NHS the duty to promote,
“research on matters relevant to the health service”,
“the use in the health service of evidence obtained from research”.
All are agreed that the Act is a major milestone which has helped to embed research within the body of the NHS.
In many senses, I think that this vision is a natural sequel to that achievement. The AMRC, working with member charities, has attempted to put flesh on the bones of phrases that were bandied around at the time of the Bill being discussed in this House—phrases such as, “placing research at the heart of the NHS”.
As the noble Lord, Lord Turnberg, mentioned, Our vision for Research in the NHS was written after wide consultation among professionals on the one hand and patients on the other, and it is built on three key concepts that emerged from that consultation. The first is involving patients: telling them about research being undertaken, how they can find out more about that research and how they can participate if they wish and it is relevant to their care. Secondly, there is involving staff so that they understand the benefits of research, are motivated to engage with it and know how to take part in it and use its findings. Lastly, there is ensuring that the NHS is open to and about its research, and develops among its staff a group of leaders who will champion research and help embed good researchers and good research practice into the NHS.
I have just three questions for the Minister. First, there is the matter of clinical trials. As I said, one key issue is the NHS being open to research, but there is concern that it is losing its share of global clinical trials. Back in the 1980s and 1990s, when I was doing more research on the pharmaceutical industry, the UK was a favoured location for clinical trials. Many multinational companies put their research laboratories here in the UK because of that. The Science and Technology Select Committee, of which I am a member, recently made a study of regenerative medicine. In the process of taking evidence for that, we learnt that despite the recognised quality of our research, it is no longer the case that we are among the leading countries doing clinical trials. One reason cited most frequently for this was the sheer complexity of procedures, especially the number of regulatory bodies involved. I noted in reading the report that this comes up yet again:
“40% of hospital doctors polled cited difficulties navigating regulatory processes as a barrier to them taking part in medical research in the last two years”.
I know that the UK Clinical Trials Gateway has been set up to simplify procedures, but can the Minister offer us any reassurance that the situation is likely to improve, and in particular that the Health Research Authority might in time become the one-stop shop that everybody is looking for?
My second question relates to co-operation between the NHS, universities and medical schools. Yesterday I attended the lecture given by my noble friend Lord Heseltine to the Industry and Parliament Trust, and I was amused when he talked about how, in the 1970s, the public sector—the Civil Service—and private sector industry were two separate worlds that worked in their own spaces and failed to recognise the benefits of working together in such areas as regeneration. In some senses, it seems that one hits the same problems between the NHS and the world of research, particularly university and medical school research:
“Our survey of almost 400 health professionals including 130 GPs found that around half knew something about the National Institute for Health Research and the NIHR Clinical Research Network … Awareness fell to around a quarter for Academic Health Science Centres, Biomedical Research Centres and Biomedical Research Units”.
Again, we know that a lot of effort is being made to bring together and develop these academic health science networks, linking up the local NHS organisations and universities. Nevertheless, that vision raises questions as to how these networks will share best practice. Can the Minister tell us a little more about how they will function?
Finally, I raise a question that was to a large extent raised by the noble Lord, Lord Turnberg. How can CCGs embed research throughout the NHS? There is considerable scepticism as to how far the CCGs will be able to do this. To help them, the report sets out on page 31 a research charter. How far does NHS England accept that charter and how much will it encourage CCGs to take note of and follow those procedures?
My Lords, I join in thanking the noble Lord, Lord Turnberg, for having secured this important debate and the Association of Medical Research Charities for having undertaken this very important work. In so doing, I declare my interest as professor of surgery at University College London, as chair for quality of UCLPartners, which is one of the five designated academic health science centres, as a member of the General Medical Council, and as vice-chair of the All-Party Parliamentary Group on Medical Research.
This report is fundamentally important because it highlights three vital issues with regard to the future of research in our NHS: that we must develop a culture, as we have heard from the noble Lord, Lord Turnberg, so that every patient is given the opportunity to participate in research; that all those who work in our healthcare system are made aware of those opportunities and are given the opportunity to develop as researchers; and finally, that the NHS, having promoted and facilitated all that important research actually adopts its findings to improve clinical outcomes and, indeed, to ensure that we use vital resources for healthcare much more effectively.
There is no doubt that Her Majesty’s Government need to be congratulated in this regard, because for the past three years, we have seen a relentless commitment to medical research in the legislation that has been brought before this Parliament. In particular, for the first time, legislation enshrines in statute the obligation of the Secretary of State to promote research and provides for the new arm’s length bodies to have a statutory obligation for research, which is vital. The reasons for this are clear. In terms of health gain, there is no doubt that the adoption of innovation into routine clinical practice will help us improve clinical outcomes for large numbers of patients, while in terms of the efficient use of resources, there is no question that some of the currently available innovations will help us to ensure that the funds available for routine healthcare can be used more effectively.
In broad economic terms, we know, for instance, that the life sciences industry—another area of government focus—is vital to future economic development in our country. As an industry, it is responsible for about £50 billion of economic activity annually, with 160,000 employees in this country. We also know that it is a net exporter, bringing in vital revenue to the country of some £7 billion per annum, and that from the point of view of investing in research, be it public or charitable funds, every £1 invested will provide 39p in economic return in perpetuity to our economy, so that is vital too.
It is not only in economic terms that the Government have started to look at the opportunities here. They have also done so in terms of the structures that might be provided to facilitate research, which is where this important research provides vital insights. However, a large number of bodies have been created recently to promote research in our NHS. We have heard about the academic health science centres. There are, of course, also academic health science networks, which will appear across the NHS in England and bring together academia, industry and the National Health Service. We have the clinical research networks, which are there to promote research at the local level within the footprints and geographies of the academic health science networks. We have the local education and training boards, which will play a vital role in the education of future academics and those who wish to participate in research, both clinicians and other healthcare professionals. We also have the centres for leadership in applied health research and care, which will promote research into outcomes in the NHS. How are these important structures to be co-ordinated at a local level to deliver the benefits envisaged?
We also have, at national level, Health Education England, which will have an important role in training academics and in setting a national priority in that regard. We have the Health Research Authority, the Medical Research Council and the Department for Business, Innovation and Skills, where the Higher Education Funding Council’s funding for medical schools rests. Again, those important national bodies will, with the National Health Service Commissioning Board and NHS England, all have an important role at national level to ensure that vital funds and resources are properly co-ordinated. How are we in this Parliament to know that all these new structures are working successfully and delivering what is envisaged? What metrics have been defined at the birth of these organisations with regard to their performance in research in the NHS? How will this Parliament hold those organisations, and indeed Her Majesty’s Government, to account regarding the investment of public money in those organisations and the outputs that are achieved?
For the first time, the Health and Social Care Act includes an obligation on clinical commissioning groups to promote research. What measures were undertaken in the authorisation of CCGs to ensure that there was a definition of their contractual obligations to NHS England to deliver that research agenda? How will the CCGs be held to account? If they fail to promote research, what sanctions are available against them to ensure that they deliver the research agenda?
I come finally to the question of regulation. I have spoken a number of times in your Lordships’ House about the problem of the European clinical trials directive. We heard about the deterioration in research activity in clinical trials, which is a result of the application of that directive over 10 years. What progress has been made regarding the renegotiation of the clinical trials directive in Europe?
My Lords, I start by congratulating the noble Lord, Lord Turnberg, on giving us the opportunity to discuss this most important report. I pay tribute in his absence to my noble friend Lord Willis, who is chair of the AMRC. As everyone does, I strongly endorse the case made so powerfully by the report to ensure that every patient has the opportunity to take part in research. However, my plea today is really about ensuring the realisation of the potential of the vast amount of data held by the National Health Service.
The scope of the National Health Service’s database is one of its greatest assets. The potential of these huge datasets, which could be drawn on for research, is much greater than the present rate of exploitation. That is not to say that there is not some excellent work being done. I draw attention to the press report which came out when the survey was published, as referred to by the noble Lord, Lord Turnberg. Professor Peter Weissberg, medical director of the British Heart Foundation, stated that:
“It’s vital we create a system where researchers have better access to patient data so we can use it to help find new life-saving treatments for heart patients”.
After “heart-patients”, read “and every other patient”. We should take great lessons from the example of 10 years ago, when the Medical Research Council and the Wellcome Trust established the UK Biobank to support the investigation of risk factors for the major diseases of middle and old age. The recruitment of more than half a million men and women aged between 40 and 69 was successfully achieved, with a great deal of support from the public, and their health has been monitored long-term. When the House of Lords Science and Technology Select Committee published its report on genomic medicine four years ago, it quoted the evidence of the Wellcome Trust Sanger Institute:
“The UK Biobank initiative has set a gold standard for ethical principles and guidelines concerning the large population studies”.
In other words, there was recognition that there was a need to protect patient privacy and to reassure the public that their concerns about the data being abused or misused were being adequately and most properly addressed. The procedures for ensuring the protection of personal privacy were considered exemplary. Yet Professor Collins of the UK Biobank told the Select Committee that if he were able to make one recommendation, it would be to remove the bureaucratic obstacles to using health records to improve the health of people in the United Kingdom. The report came out just after the Information Commissioner at the time, Richard Thomas, and Sir Mark Walport, now the Government’s Chief Scientific Adviser, had conducted a data-sharing review in 2008. This review concluded that,
“the complexity of the law, amplified by a plethora of guidance, leaves those who may wish to share data in a fog of confusion”.
What has changed over the last four years? First and foremost, the technology has changed. The ability to collect, store, share and integrate ever greater volumes of data has advanced exponentially. However, our ability to unlock more of the vast database that is available from the National Health Service has not matched these advances in technology. We are still not using these data to their full potential, to ensure that research findings are transferred to clinical and therapeutic use. The huge datasets that could, with public support, be drawn from the National Health Service and which could underpin new and exciting opportunities for the diagnosis and treatment of disease are still waiting for full exploitation.
The biobank has been an outstanding example of what can be achieved. When the public are effectively engaged, there is overwhelming support for their own data to be used to support the public good. It is therefore essential to reassure the public that their data will be handled safely. This requires effective systems and good communication among practitioners, researchers and patients—and, indeed, among all healthcare professionals. The UK Biobank has shown that this can be done.
My Lords, I should like to focus on only one area of NHS research—namely, research relating to pancreatic cancer, which is probably not to the great surprise of the Minister. In doing so, I thank the charity Pancreatic Cancer UK for its briefing, James Tobin at the House of Lords Library for his typically helpful briefing pack and I congratulate the noble Lord, Lord Turnberg, on obtaining this debate.
Pancreatic cancer accounts for 5% of cancer deaths in the UK but it currently attracts only 1% of research spending. So perhaps it is little wonder that outcomes in survival rates, for example, have shown little if any improvement in 40 years, yet evidence from other cancers, such as breast cancer, shows that increased research effort can lead to significantly better outcomes.
For research to be effective in this way, a number of essential infrastructure elements need to be in place, several of which are rightly identified in the AMRC report. There need to be recognised centres of research excellence covering areas such as pancreatic cancer; an adequate body of appropriately qualified and skilled researchers; an ability to attract new young researchers into the specific field; and a strong pipeline of good research proposals. Beyond that, research needs a critical mass, estimated to be at least £10 million to £12 million a year, as opposed to the current spending level of £5 million for pancreatic cancer research.
The first part of the AMRC report focuses on patient involvement in research and sets out three aims: every patient should be able to take part in research; research should be patient-centred; and research should be embedded in patient care. I ask the Minister: what can he and the Government do to ensure that these three aims are achieved for pancreatic cancer patients?
Specifically, pancreatic cancer patients are often unable to access clinical trials. Lower levels of investment in pancreatic cancer research mean that there are fewer clinical trials available. One study found 91 breast cancer clinical trials taking place against only 15 for pancreatic cancer. Less than 10% of pancreatic cancer patients say that they have been involved in any discussion about clinical trials, and less than 12% are enrolled in such trials, against about one in six cancer patients overall. In any case, many pancreatic cancer patients are diagnosed too late to be fit enough to participate in trials. So how can the Government help to ensure that more pancreatic cancer patients can access clinical trials? I hope the Minister will have some ideas.
The third part of the report relates to conducting high quality research and adopting new treatments. Apparently, much pancreatic cancer research tends to be researcher-led—there is little in the way of strategic direction from funders—unlike some other countries, such as Australia, which have clearly defined research priorities and achieve more impressive results. How can the Minister help to ensure that government engages with relevant research bodies in a collaborative effort to develop a strategic research agenda for pancreatic cancer?
I ask the Minister to look at a number of other measures, such as encouraging existing cancer research centres to increase their focus on pancreatic cancer; providing support to develop more skilled researchers, specifically in pancreatic cancer, and to ensure that this field of research is seen as offering a good career path, which is clearly one of the challenges at the moment; helping to raise the profile of pancreatic cancer within the research community, perhaps by the appointment of a UK pancreatic cancer research champion; and ensuring that the UK learns from experience in other countries and that research findings are freely shared internationally.
Pancreatic Cancer UK is doing its bit, for example with its own research innovation fund and future research leaders fund. I hope the Minister can tell us how government will add weight to efforts such as these so that we can put in place an effective research programme which will finally start to turn the tide of dismal pancreatic cancer outcomes and bring some real hope to sufferers from this dreadful disease and to their loved ones.
My Lords, I join other noble Lords in congratulating the AMRC on the report and the noble Lord, Lord Turnberg, on bringing it to our attention. I share with the noble Lord the view that grief is not a disqualification from rational thought. I particularly congratulate Sharmila Nebhrajani, the chief executive of the AMRC. Reading this report, she reminds me of Adlai Stevenson’s striking description of President Kennedy: an idealist without illusions.
She is certainly a realist to say that,
“we still have quite a way to go if we are to get close to the government’s goal of every clinician a researcher and every willing patient a research participant”.
In saying that, the AMRC is reflecting the Prime Minister’s speech on life science in December 2011. He speaks about 34 Nobel prizes in medicine in the context of the global race in which, he says,
“we must ensure that the UK stays ahead … to keep pace with what’s happening we’ve got to change quite radically … the way we innovate”.
As has been said, the Prime Minister sees the NHS as an amazing asset to innovation because it has,
“a huge wealth of information all consented to, all anonymous—and that is helping them find new answers”.
The Prime Minister concludes that,
“the end result will be that every willing patient is a research patient; that every time you use the NHS you’re playing a part in the fight against disease”.
He reflects the view of his life science adviser, George Freeman, who also in a recent article wants to see every willing patient a research patient.
Unfortunately, the shared vision of the Prime Minister and the AMRC is about to hit a roadblock because, as T S Eliot put it:
“Between the idea And the reality … Falls the shadow”.
In this case, the irresistible force of their idea, their dream, will soon meet an immovable object, which is the law. Current law obliges the doctor to follow the status quo, even though he or she knows that it leads only to poor life quality followed by death. This is why all cancer deaths are wasted lives. Science learns nothing from those thousands of deaths—scientific knowledge does not advance by one centimetre—because current law requires that the deceased receive only the standard procedure, the endless repetition of a failed experiment. The pre-eminence in law of the standard procedure is a barrier to progress in curing cancer.
I had better close with this. There is not time to take your Lordships through the case law that I have here but I will summarise it like this. Under present law, any deviation by a doctor from the standard procedure is likely to result in a verdict of guilt for medical negligence. Current law defines medical negligence as deviation from standard procedure. However, as innovation is deviation, non-deviation is non-innovation. That is why there is no cure for cancer. That is why the AMRC vision of every clinician a researcher cannot be realised without a change in the law.
We do not want patients to be treated like mice but, on the other hand, we want bold scientific innovation, which alone can bring a cure for cancer. It is well known that in politics, when a man says, as I say now to the noble Lord, Lord Turnberg, “I agree in principle with this report”, it usually means, “I intend to do nothing about it in practice”. On the contrary, I say to the noble Lord, Lord Turnberg, that not only do I intend to do something about it in practice, I intend to devote my entire life to ensuring that the dream of the Prime Minister and the AMRC comes true.
My Lords, I apologise for missing the deadline yesterday and hence being squeezed into the gap. I wanted to say a few words about the position of general practice in the health service. As my noble friend pointed out, the AMRC report finds that fewer GPs than hospital doctors are interested or involved in research, most of them citing time as the reason. Setting aside dedicated time for research is not easy in the average primary care setting. It is also possible that fewer GPs are research-minded and that, except for academic general practice, publishing peer-reviewed research papers is less important in their career advancement.
However, research in general practice is alive and well. Every medical school now has an academic department of primary care linked to the Royal College of GPs, supporting research in primary care through the RCGP innovation and research centre. The director of the centre suggested to me that the academic status of general practice would be enhanced if more research-minded and bright medical students or doctors could be recruited into general practice. One way in which to do this would be for the NIHR to proactively offer to fund PhD or MSc fellowships in general practice. This would be attractive to research-minded medical students or practitioners contemplating a career in general practice but uncertain about its research possibilities. Does the noble Earl have any influence over the funding decisions of NIHR? I suggest that this might be promising territory.
My experience, in answer to various noble Lords who have mentioned patients in research, is that patients are nearly always willing to take part in research projects if it is recommended to them by a doctor, hospital or care unit that they trust and its purpose is fully explained to them.
I, too, congratulate my noble friend Lord Turnberg on securing this debate, especially his timing following hot on the heels of our scrutiny of the Health Research Authority under the Care Bill. My noble friend is a much respected and tireless champion for research and innovation, leading to improved quality care for patients, and we in our party rely strongly on his expertise and support.
My noble friend and other noble Lords from across the House between them ensure that the importance of research and innovation to the NHS is kept to the fore, by this debate and, for example, in recent debates by the noble Lord, Lord Kakkar, on the impact of the EU healthcare in the UK and the concern over the UK losing its global allocation of clinical trials, and in the powerful debate earlier this year of the noble Lord, Lord Saatchi, on medical innovation, which reinforced the need to deal with the regulatory burden, to which noble Lords have referred, and to speed up the availability of innovative treatments.
Like other noble Lords, we welcome the progress on speeding up research approvals made by the HRA through the single portal of entry and single application procedure and bringing together the various research ethics committees. However, the point about the need for progress in getting the local R&D committees of NHS trusts singing from the same hymn sheet is well made and I look forward to the Minister updating us on the action that the Government are taking.
Like other noble Lords, I congratulate the AMRC on its excellent report and the accompanying survey of healthcare professionals’ views on the importance of research to the NHS and to staff working for it. Under the Care Bill, the need for Health Education England to ensure that research and innovation are incorporated into education and training for healthcare staff was a major theme, echoing the Joint Select Committee on the Bill on this issue. All NHS staff need to be able to make use of research throughout their careers and should be equipped with the tools to understand and support research and to assess and use evidence to inform their decisions when caring for patients or supporting clinical staff.
As noble Lords have pointed out, the association’s survey showed the challenges to be faced. The good news was that staff overwhelmingly recognised the value and importance of research, but the barriers to taking part in research, identified by the majority of staff surveyed, including doctors and nurses, was deeply worrying. It is clear that these barriers of lack of time, problems over funding and support and the difficulties of navigating regulation have to be overcome, particularly the need to develop stronger support among GPs to become personally involved in research. After all, they are such an important gateway to spreading the message to get patients interested and involved in research. As my noble friend put it, there is still much to do at the coal face. This is where the ARMC report is so valuable. It offers an authoritative but very practical vision of how the goal of having every clinician a researcher and every willing patient a research participant can be progressed and achieved, as well as how the leadership and support that the NHS staff need can be developed and built into a service-wide research culture.
The case studies in the report are particularly informative, providing examples of excellence and best practice in cancer, arthritis and other key research areas of patient consultation and involvement, and of building staff support and confidence about participating and using research findings so that they can show their patients the benefits of them taking part.
In the context of this debate it is important also to reflect on the progress being made on the UK life sciences and the innovation, health and wealth strategies, the central aim of which is for innovation to become the NHS’s core business. No one reading these reports and the recent one-year reviews can be in any doubt of the dramatic pace and scale of change in the medical and life sciences, such as the breakthrough in genomic medicine, which is changing fundamentally the way disease is diagnosed, prevented and treated, and the progress on regenerative medicine, which are all breathtaking to a lay person such as myself.
There are important developments on the service side, too, as part of the high impact innovation programme, such as in wheelchair design. Can the Minister update the House on progress on implementing the strategies? I could not find any details on the website about further review reports or of the Government’s response to the MHP Communications review of the strategies, which charted good progress but also some continuing problems, including implementation of NICE technology appraisals by NHS trusts and the poor level of awareness of the IHW strategy; only 30% had discussed the strategy at board level. How are these issues being addressed?
Finally, on the association’s vision, I would reinforce the need to keep our foot on the pedal to ensure that we continue to be a world leader in clinical research. We must ensure that CCGs in the absence of SHAs and PCTs continue the focus on research and do not allow it to diminish. The AMRC vision highlights the need for leadership and guidance to CCGs to promote research; to encourage NHS managers so that they understand the value of research and actively support it through their management decisions and processes; and to ensure that all parts of NHS support research, including primary care and all non-NHS providers. I look forward to the Minister’s response updating the House on the Government’s actions to ensure that real progress is made on all these fronts.
My Lords, I begin by thanking the noble Lord, Lord Turnberg, for having tabled this debate. He has spoken with both authority and passion about Our Vision for Research in the NHS, the report by the Association of Medical Research Charities. The Government welcome the report; it is a challenging and insightful contribution to the debate on optimising the research potential of the NHS.
It is now more than seven years since the National Institute for Health Research was established in April 2006. The NIHR has a wide-ranging role that is central to our debate today. It provides the framework through which the Department of Health can position, maintain and manage the research, research staff and research infrastructure of the NHS in England as a national research facility. Indeed, together, NIHR people, facilities and systems represent the most integrated clinical research system in the world—driving research from bench to bedside for the benefit of patients and supporting economic growth.
My noble friend Lady Sharp referred to the importance of clinical trials, and of course, that is centre stage for the NIHR. As a result of the NIHR, large numbers of patients have the opportunity to take part in research. In the past financial year, more than 630,000 participants were recruited to trials and studies hosted by the NIHR Clinical Research Network Portfolio, and more than 99% of NHS trusts were involved in the recruitment. During the whole of 2013-14, the NIHR is promoting the fact that, “It’s okay to ask” about clinical research. We want everybody to get involved—patients, medical professionals and the public to support the campaign.
In March 2013, the Government published the revised NHS constitution, which contains a pledge to inform patients of research studies in which they may be eligible to participate. The pledge aims to give people better access to the potential benefits of participating in research studies, including clinical trials. We have already improved the amount of information available to patients, clinicians and the public about clinical trials by establishing the UK Clinical Trials Gateway. I just say to the noble Lord, Lord Aberdare, who spoke very powerfully about pancreatic cancer and the need to enlist more patients into trials for that condition, that the launch of the gateway was promoted through leaflets and other printed materials, including postcards and posters, and the gateway is also being actively promoted by INVOLVE, which is the NIHR-funded patients and public involvement body. In the course of just one month, May of this year, there were 11,570 visitors to the gateway website. Although not all of them will be related to pancreatic cancer, I hope that that gives an indication of the powerful influence that we hope the gateway will have in alerting patients to relevant studies.
Crucial to all this activity is the need to both protect and promote the interests of patients and the public in health research. That is why we established the Health Research Authority in 2011, and provisions in the Care Bill will give it added stability and independence. To my noble friend Lady Sharp I would say that the HRA has a programme of work to enable the implementation of a unified approval process and to support the authority in promoting consistent and proportionate standards for compliance and inspection. The programme includes a feasibility study with a number of pilots to test the effect of rationalising and combining elements of NHS study-wide review with elements of the research ethics committee review into a single HRA assessment. The findings are expected to identify and show how to release the potential to improve both study set-up times and the quality and consistency of ethical review.
The noble Lord, Lord Kakkar, very helpfully acknowledged that enactment of the Health and Social Care Act is a milestone for research in the NHS. It recognises the need to promote research and the use of research evidence and created unprecedented powers and duties at all levels to meet that need. The Government’s mandate to the NHS Commissioning Board—now NHS England—sets an objective to ensure that the new commissioning system promotes and supports participation by NHS organisations and patients in research funded by both non-commercial and commercial organisations, most importantly to improve patient outcomes, but also to contribute to economic growth.
The noble Lord, Lord Kakkar, specifically asked how CCGs will be held to account. The mandate asks for demonstration of progress against the five domains and all the outcomes indicators in the NHS outcomes framework. The framework document emphasises that vital to the quality and delivery of these outcomes will be continued research and the use of research evidence in the design and delivery of services at a local level.
NHS England welcomes the vision for research set out by the AMRC and shares its aspirations to empower patients to take part in research; to engage clinicians and other NHS staff; and to implement research findings to lead to better outcomes for patients and the public. Although NHS England is a new organisation, the NHS—as I do not need to tell the noble Lord, Lord Turnberg—has a strong existing culture of research, although we want to strengthen that culture. There is a wide wealth of research activity already taking place and considerable expertise within organisations. However, NHS England recognises there is further work to do to ensure that all NHS commissioning staff embrace a research culture, which was the theme of my noble friend Lord Saatchi’s excellent contribution, that they have access to research evidence and use it to inform commissioning decisions. It has recently recruited a team to lead the research agenda and develop and implement its research strategy. It is anticipated that a draft strategy will be in place by autumn this year, when extensive consultation with key stakeholders and partners, including patients, will be undertaken.
The noble Lord, Lord Turnberg, and my noble friend Lady Sharp rightly referred to the vital role of clinical commissioning groups within the new system. Through their formal declaration of compliance, all these groups have confirmed that they understand and will comply with their statutory responsibilities regarding promoting research. They have also confirmed that they are committed to following the policy of ensuring the NHS meets the treatment costs for patients taking part in research funded by government and research charity partner organisations. Alongside NHS England, Health Education England has responsibility for promoting high quality education and training that is responsive to the changing needs of patients and local communities. It will work with stakeholders to influence training curricula as appropriate.
HEE will work to build a workforce that is research-literate, with the skills and confidence required to diffuse the latest ideas and innovations. HEE will establish mechanisms to ensure that ongoing engagement takes place with a wide range of partners. This will include building relationships with academic health science networks and academic health science centres to align education with research and innovation. The noble Lord, Lord Turnberg, referred to the role of LETBs, which are responsible for commissioning education and training and securing quality and value from education and training providers. Indeed, they will need to ensure that the education and training that they commission is in line with national objectives, which include building a flexible workforce that is receptive to research and innovation. HEE and the LETBs are working with the NIHR to ensure appropriate investment in education and training, to develop clinical academic careers and to increase the number of staff accessing academic careers programmes across all clinical and public health professions.
I say to the noble Lord, Lord Rea, that the NIHR supports a wide range of programmes for research training and career development. The purpose of these is, self-evidently, to create the next generation of researchers focused on people-based research. The programmes provide support for the academic training paths of all healthcare professionals and other key disciplines involved in health and social care research, including, importantly, general practice. The NIHR is actively building research in general practice—for example, through its School for Primary Care Research. Through its integrated academic training programme, the NIHR has already taken a lead in reversing the decline in clinical academic careers.
The noble Lord, Lord Turnberg, spoke about investing in research, and of course I very much identify with the need to do that. As part of the commitments announced by the Government yesterday to invest in Britain’s future, the department will provide £150 million of capital investment in 2015-16 to fund health research infrastructure in the areas of dementia, genomics and imaging.
As regards clinical excellence awards and the consultant contract, discussions are ongoing between the UK government health departments, NHS employers and the BMA about changes to the consultant contract. The aim is to agree a heads of terms next month and to move to detailed negotiations. I will write to the noble Lord with further details about that.
My noble friend Lord Selborne spoke very powerfully about data from the NHS. One million people have some form of contact with the NHS every 36 hours. That produces, as he rightly said, a staggering amount of data, which can be used to drive forward research into new treatments. The NHS is in a unique position in that sense. We can draw on linked datasets on a scale unprecedented elsewhere in the world. Provided that we ensure confidentiality and privacy for individual patients, the opportunities for research and innovation are vast. In April last year, we established the Clinical Practice Research Datalink, which enables access to anonymised patient records to support the development of novel treatments. I can reassure the noble Lord, Lord Turnberg, that the CPRD is working with the NIHR primary care research network to recruit more GP practices to contribute their data to the CPRD’s data assets.
The clock is moving against me, so noble Lords will have to forgive me if I do not cover all their questions today but I undertake to write to those noble Lords whose points I have not covered—and there are many. I hope that the noble Lord, Lord Turnberg, in particular, has gained a sense of the importance that the Government attach to promoting research in the NHS, and a sense that we need, and have, a whole-system approach to this agenda, which is so vital for the future health and prosperity of our nation.