97% of the public believe that it’s important the NHS should support research into new treatments according to an Ipsos MORI poll published on Thursday 9 June. The poll, commissioned by the Association of Medical Research Charities (AMRC), Breast Cancer Campaign and the British Heart Foundation also shows that 92% of people believe it’s important for the NHS to support such research funded by charities.
The NHS hosts vital health research aiming to improve patient care in the future. Our polling showed that 93% of people want their local NHS to be encouraged or required to support research.
Emma Freeborn, a woman living with breast cancer, said:
"As someone who was diagnosed with primary breast cancer at the age of 27, and then with secondary breast cancer a year later, the advances I have seen and benefited from since my original diagnosis have been tremendous, and I am excited about further developments in the pipeline. Receiving new treatments has enabled me to carry on with the life I love – to get married, to work and to progress my career, to run a girl guide unit, to holiday and to continue to plan the future. All these new treatments are possible because of research. It is vital that the NHS supports this research and future treatments and I hope that the government’s health bill makes research a priority."
A group of 16 leading charities and organisations supporting health research jointly wrote to the NHS Future Forum, laying out the key changes that need to be made to the reforms to embed and support research as a core role of the NHS and help them fund research within the NHS.
These are:
- embed a duty to promote research throughout the system.
- develop mechanisms to mitigate the impacts of localisation on research
- clarify the payment of excess treatment costs in the new commissioning structures
- create incentives for research
- ensure independent advice to government is maintained
- develop a system that supports and strengthens meaningful patient and public involvement in research.
Our poll also found that 72% would like to be offered opportunities to be involved in trials of new medicines or treatments if they suffered from a health condition that affects their day-to-day life.
In 2009-10, over 3000 clinical studies were conducted in the NHS; 37% were funded by AMRC member charities. But getting a clinical trial off the ground can take a long time even when funding is secured. To conduct research well, there needs to be a culture of promoting and conducting research throughout the NHS and the public health system – a lack of engagement at just one level can result in delays and potentially act as a barrier to research. This is why we are calling for a duty to promote research to be placed consistently on the bodies making up the reformed health system.
Health charities represent people living with conditions who invest their hope in the development of new preventions, treatments and cures. To improve their healthcare in the future we must invest in research and create a health service where that investment can flourish.
Lord Phil Willis, chair of the Association of Medical Research Charities, said:
“The Ipsos MORI poll is the clearest evidence yet that the public not only support and value medical research but patients would want the opportunity to be involved in clinical trials if they had a health condition. For the charitable sector which ploughs over £1bn into ground breaking research every year this is exactly the message it needs to convince donors that their money is being well spent.”
Pamela Goldberg, Breast Cancer Campaign’s chief executive, said:
“It is extremely encouraging to see that people feel so strongly about research within the NHS. Breast Cancer Campaign recently launched the world’s first breast cancer specific tissue bank, which will help accelerate research from the laboratory to patients, and it could not be done without collaborating with the NHS.
We hope that changes to the health bill will reflect the importance of research in the NHS and are calling for a duty on the secretary of state and all relevant health bodies to promote research. This will ensure progress continues to be made for the benefit of patients.”
Professor Jeremy Pearson, associate medical director at the British Heart Foundation, said:
“It’s clear the public thinks supporting research into new treatments to help improve our nation’s health should be a fundamental part of what the NHS does.
“To reflect the importance of medical research, the government now needs to ensure that its NHS reforms foster a culture of promoting and conducting research. This must start with the NHS Commissioning Board and filter right down to the GP consortia.”
Sir Mark Walport, director of the Wellcome Trust, said:
“We are delighted that the public recognises the vital role that research plays in a modern NHS. It is essential that reform of the NHS provides the best health for the population at a price that is affordable, and research and innovation are absolutely key to achieving this goal. The Health and Social Care Bill must strengthen the role of research in the NHS, in order to make the NHS a stronger and more willing partner in progress towards better ways of preventing, diagnosing and treating ill health."
Rebecca Wood, chief executive, Alzheimer’s Research UK, said:
"This is an emphatic response from the public that they expect their NHS to support vital research into diseases. Patient engagement and NHS support at every stage of research, from blood samples to brain donation, are essential to help us defeat dementia. Research is the only hope for the 820,000 people living with dementia in the UK. We must invest and work together now if we are to reduce the social, economic and human cost of this devastating disease in the future. "
Professor Alan Silman, Arthritis Research UK medical director said,
‘We welcome the confirmation that the large majority of NHS patients would like the opportunity to participate in medical research if they had a health condition and that so many believe the NHS should support research funded by charities. Arthritis Research UK involves members of the public in deciding which research projects are funded, and focuses on areas that will make a real difference to the lives of people living with arthritis. We rely on substantial public participation to support our ambitious clinical trials programme and to continue to translate research into new treatments for patients.’
Professor Peter Johnson, Cancer Research UK's chief clinician, said:
"This survey confirms the outstanding public support for charity-funded research in the NHS, which has led to better treatment for patients across the country. It's critical that the Health and Social Care Bill reflects the strength of public opinion and seizes this opportunity to embed research in the NHS, so more lives can be saved from cancer.
"Patients who are treated in places where clinical research is integral to patient care are more likely to survive cancer, and can access new treatments more quickly. The UK has done well so far - at least one in six cancer patients are now involved in clinical research - and the health bill gives us a good opportunity to build on this success."
Prof Norman Williams, president-elect of the Royal College of Surgeons of England (and director of Centre for Digestive Diseases, Barts and the London), said:
“It is a stirring endorsement of the founding principles of the NHS that patients don’t just care about their own treatment today – they want to see the NHS working to find the treatments of tomorrow for their children and grandchildren. Although surgeons have made significant contributions to this agenda over the years they need to respond even more to this overwhelming enthusiasm and willingness by the UK population to be active participants in clinical research studies and think about how they can contribute.”
Dr Brian Dickie, director of research development, Motor Neurone Disease Association, said:
“The overwhelming support demonstrated in this poll indicates the importance that patients and public place on clinical research. Considerable advances are being made in understanding complex diseases such as motor neurone disease and the NHS will play a vital role in translating this new knowledge into better diagnostics and potential treatments. Medical research is no different from medical treatment in that it has to start and finish with the patient.”
Chris Askew, Breakthrough Breast Cancer’s chief executive, said:
“These results show overwhelming public support for maintaining the vital role of the NHS in developing potentially life saving new treatments. It is crucial that the public’s voice is heard. Any changes to the NHS must protect its dual role in delivering services and driving forward development of the breakthrough treatments of the future.”
Owen Sharp, chief executive, The Prostate Cancer Charity, said:
“Today’s findings help to send a clear message to the Government that the public want the NHS to continue to play a big role in supporting research into new treatments. Research into prostate cancer, the most common cancer in men, still suffers from a chronic funding deficit. The Government has a critical role to play in helping to stimulate more research from the NHS and we hope that it will respond to this study by ensuring that reforms to the NHS embed and support research as a core role of the NHS.”
Alastair Kent OBE, director Genetic Alliance UK, said:
“For patients who find themselves with a life limiting disease, the hope for the future lies in sustained research – and in the application of this research in the form of new therapies that will change their prognosis and improve both the quality and the quantity of their lives. Despite recent progress there are still many thousands of patients with diseases about which little is known, and for whom nothing can be done. Changing this, and providing a future in which currently lethal diseases become manageable and eventually curable is dependent on high quality biomedical research – and this is why patients and families support the opportunity that the NHS, our universities and the private sector provide to work together to meet these unmet needs and improve the lives of patients and families now and in the future. It is vital that the Health and Social Care Bill embeds research in the fabric of the NHS and creates an environment where research can flourish.”
Commenting on some of the issues which can currently make it difficult to conduct research in the NHS,
Professor David J Burn, acting director, Institute for Ageing and Health, and Professor of Movement Disorders Neurology, Clinical Ageing Research Unit, Newcastle University, said:
"There is a lack of clarity over how to recover the excess treatment costs that are needed to conduct clinical research across multi-centre sites. This has led to a delay of over a year in recruiting patients to a vital trial to find out whether a new drug is effective for the treatment of dementia associated with Parkinson's. No one seems to take the lead in resolving these issues in each area. This has caused serious delays in moving closer to vital new treatments that may benefit people with Parkinson's."
Dr Kieran Breen, director of research and development, Parkinson's UK, said:
"A vital plank in the research into the causes of Parkinson's involves the study of post-mortem brains. The Parkinson's UK Brain Bank is a unique store of brain tissue that can benefit research throughout the world. However, obtaining the corresponding patients medical notes from the NHS, which are vital to the study of each brain, can be extremely difficult. This is particularly so for GP patient notes. We need a clear framework for sharing patient data across the NHS so that vital research that may lead to a cure for Parkinson's can move forward."
ENDS
Notes to editors
- The Association of Medical Research Charities (AMRC) is a membership organisation of the leading medical and health research charities in the UK. In 2010-11, AMRC member charities invested over £1 billion into health research in the UK.
In 2009-10 the National Institute for Health Research (NIHR – the research arm of the Department of Health) invested £919.5 million in health research. They also provide the infrastructure which underpins collaborations with funders including medical research charities, research councils and private investors supporting studies into a wide range of conditions.
- The government outlined their commitment to the promotion and conduct of research as a core role of the NHS in the health white paper Equity and Excellence: Liberating the NHS. There is a significant risk that the changes proposed in the Health & Social Care Bill will not deliver this commitment and may actually prove detrimental to research in the NHS.
- Patients value opportunities to be involved with research since it helps to improve their outcomes for the future.
‘It should be called the National Health and Research Service – not just health.’ AMRC/INVOLVE, Patient perspectives on the regulation and governance of medical research, 2010
- The 16 organisations supporting a joint submission to the NHS Future Forum were:
The Academy of Medical Sciences
The Association of Medical Research Charities
Alzheimer’s Research UK
Alzheimer’s Society
Breakthrough Breast Cancer
Breast Cancer Campaign
British Heart Foundation
Cancer Research UK
Diabetes UK
Genetic Alliance UK
Motor Neurone Disease Association
Parkinson’s UK
The Prostate Cancer Charity
RNID
The Royal College of Surgeons of England
Wellcome Trust
- Ipsos MORI interviewed a representative quota sample of 990 adults in Great Britain aged 15+. Face-to-face interviews were conducted in-home between 27 May and 2 June 2011. Data are weighted to the known profile of population of Great Britain (aged 15+).
- Support from the NHS to conduct research in the context of this poll was understood as support to find the right patients to take part in the research, to allow NHS staff time to conduct research projects, or other kinds of help.
9 June 2011