NHS: Association of Medical Research Charities Report

Lord Turnberg Excerpts

Thursday 27th June 2013 Grand Committee

Asked by

[Lord Turnberg]

To ask Her Majesty’s Government what is their assessment of the report by the Association of Medical Research Charities, Our Vision for Research in the NHS.

[Lord Turnberg]

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.