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Primarolo: NHS health research shapes up for the future

DEPARTMENT OF HEALTH News Release issued by The Government News Network on 17 January 2008

Patient and public involvement are key to success

A progress report is published today by the National Institute for Health Research (NIHR), which summarises all the progress that has been made putting in place the infrastructure, programmes and systems to facilitate health research - since the government launched the Best Research for Best Health strategy in January 2006.

Also launched today is a new section of the NHS Choices website, which is designed to give patients and members of the public more information about how to get involved in clinical trials.

The main progress highlighted includes:

* NIHR clinical research networks have been set up to support clinical trials throughout England, and promote patient and public involvement in health research. They are already boosting the numbers taking part in clinical trials improving their speed, quality and co-ordination.

* A good example is cancer research. The UK now has the highest national per capita rate of cancer trial participation in the world.

* Creating world class centres of excellence around the country. £450 million has been invested in eleven new biomedical research centres which are investigating major causes of illness and death such as cancer, heart disease, asthma, HIV, mental illness, blindness, childhood diseases and ageing.

* The NIHR is now commissioning more research through our new and expanded programmes and world class research centres. In 2006/07 our Health Technology Assessment Programme funded 22 new projects at a cost of more than 15 million pounds. In the same period we expanded our Service Delivery and Organisation programme to include new topics and areas and funded £45 million in programme grants.

The new 'Health Research' feature of the NHS Choices website provides information for those who are interested in all aspects of research - from setting research priorities to actually participating in trials themselves. The emphasis today is about ensuring medical research is relevant and benefits all communities across the country.

Clinical trials are research studies where patients test treatments or approaches to prevention or diagnosis to see if they are safe and effective, and any better than what already exists.

As well as encouraging more patients to take part in clinical trials there is also a need for more people to get actively involved in their development. It is not only patients who can do this, but carers, parents, and members of the public. This includes helping researchers to identify and ask the right questions in the right way and making sure that health and social care research is relevant to all those who use health services.

Public Health Minister Dawn Primarolo said:

"The Government is committed to making the NHS in England a centre of excellence for health research. To do this we need the help of the public in getting involved in health research across the country.

"In October 2007 the Government confirmed its commitment to supporting
health research in the Comprehensive Spending Review. Public funding for health research will rise to £1.7 billion, with ring-fenced funding for the National Institute for Health Research of £1 billion by 2010-11. This level of funding will support an unprecedented growth in the number of NHS clinical trials in England.

Sally Davies, Director General of Research and Development, Department of Health said:

"Our intention is to make the NHS a hive of research activity that attracts the best researchers in the world. We are fostering a culture that pioneers new treatments in the full range of NHS settings, and working to improve the health outcomes for all NHS patients.

"We know that clinical trials have a positive effect throughout the NHS as new findings and best practice are developed and shared. I would like to encourage people who are interested to visit the NHS Choices for further information about getting involved in health research."

Sir Leszek Borysiewicz, Chief Executive of the Medical Research Council said:

"In less than two years since it was established, the National Institute for Health Research has made incredible progress in transforming the research environment in the NHS. The MRC is delighted to be working in ever closer collaboration with NIHR to deliver enhanced opportunities for clinicians and biomedical scientists.

"The NIHR has channelled ever greater investment into expanding programmes of research, and provided funding to support innovative technologies and improved facilities and equipment in the NHS. It is streamlining research processes to ensure this country remains the place of choice for the pharmaceutical, bioscience and healthcare industries R&D. The scale of change and the overall achievement is to be welcomed and lauded wholeheartedly."

Notes to Editors:

1. The National Institute for Health Research provides the framework through which the research staff and research infrastructure of the NHS in England is positioned, maintained and managed as a national research facility. The NIHR provides the NHS with the support and infrastructure it needs to conduct first-class research funded by the Government and its partners alongside high-quality patient care, education and training. Its aim is to support outstanding individuals (both leaders and collaborators), working in world class facilities (both NHS and university), conducting leading edge research focused on the needs of patients.

2. The NIHR research networks include the Primary /care /research Network, Comprehensive Research Network and six topic specific clinical research networks for cancer, dementia and neurodegenerative diseases, diabetes, medicines for children, mental health and stroke.

3. Biomedical Research Centres will drive innovation in the prevention, diagnosis and treatment of ill-health and translate these advances into NHS practice.

4. For information about clinical trials please go to http://www.nhs.uk.

5. A case study of a 10 year old child patient who was involved in a clinical trial is below.

BETTER TREATMENTS FOR SICK CHILDREN

The new NIHR Medicines for Children Research Network (MCRN), led by a partnership between the University of Liverpool and Alder Hey hospital (the Royal Liverpool Children's NHS Trust), aims to facilitate the development of safe, effective medicines specifically for children meaning that, for the first time ever, children can benefit from treatments designed, developed and licensed especially for them.

Many of the medicines doctors use to treat sick children are actually designed for and tested in adults. Clinicians use their skill and judgement in deciding how to prescribe them for children, but they desperately need a sounder evidence base for their prescriptions.

A wide range of health professionals are involved in the Network together with representatives from the pharmaceutical industry and most importantly, children and their parents.
Georgia Semple, 10, who used to have leukemia, explains how she hopes the Medicines for Children Research Network will improve treatments for others like herself.

"Having leukaemia was horrid for me and my family. I felt sick and tired all the time. The medicines were horrible. They made my hair fall
out, which made me cry and cry. And I had to go to hospital every time I had even a tiny infection. I was on medicine for two and a half years and finished in May. I feel OK now but I still get tired.

The MCRN asked my Daddy if I would be interested in being on its children's group Stand Up, Speak Up! I said 'Yes' because I want people to find better medicines than the ones I had.

We meet up about once every two months. There are about 14 children in the group split into two age groups - 9 to 12 and 13 to 18.

We have been learning about how medicines work, where they come from and how trials are done. I know what a randomised controlled trial (RCT) is and I am in one for leukaemia treatment.

We've helped make information sheets better for children and designed logos, which were actually used. I also designed the smiley faces logo for Stand Up, Speak Up!

Our group is working with researchers to help design better trials aimed at children and young people.

I missed that session but we choose ones that should make a real difference to how children are treated."

Georgia Semple is on the young persons' advisory panel set up to work with MCRN leaders and to encourage young people receiving medical care to take part in research. She has two sisters, a kitten, a dog and a Mummy and Daddy.