Whenever I look at Cancer Research UK Facebook posts I always see comments from people who have something to say about the way the charity distributes its funds by cancer type. Obviously if you have had experience of a particular cancer type then you will be anxious to know that cures for that cancer type are being researched. If anyone actually asks me about this I always direct them to one place: The NCRI as they ensure the research funds and various research projects are distributed between the various charities funding research into cancer. So I thought I would use today’s post to talk about what the NCRI do.
What is the NCRI?
The UK has a rich history of researching cancer and the first charity dedicated to this was set up in 1902. Research activity has increased rapidly over the years as the number of cancer sufferers has gown. We now have government health departments as well as research councils and a whole host of charities funding cancer research. The National Cancer ResearchInstitute is a collection of some these UK cancer research funders. Between them the partners of the NCRI have funded over £4.5 BILLION since 2002 and they work together to make sure the funds are used to their best effect.
As there are so many different organisations doing research it is important that they work together to make sure the funds are put to the best use possible. This means they try not to duplicate research and try to ensure there are no gaps.
The NHS Cancer Plan was written in 2000 and proposedformalizing the connections of funders of research into cancer as, although they had been working together since the 90’s, there wasn’t a formal way of working and the NCRI was created in 2001 to do just that.
The NCRI was originally formed with fifteen organisations and they provided funding to form a small secretariat. The early work of the NCRI was to provide a way of building connections between the partners and establishing a database of the funding so that areas of strength and weakness could be easily identified.
The role NCRI has grown and become more diverse over the years. As with most things, challenges were identified and things were developed and changed. The NCRI now has 22 partners who spend more then £500 million on research into cancer between them every year. As so many organizations are involved and so much money is handled, the need for the coordination of the NCRI is more important then ever.
The partner organizations are government or charity organizations supporting cancer research in the UK. They wish to work together to ordinate their research to avoid duplication of research and maximize the impact of their research for the benefit of the public.
The 22 members of the NCRI are:
*Department of Heath
*Cancer Research UK
*Macmillan Cancer Support
*Marie Curie Cancer Care
*Prostate Cancer UK
*Worldwide Cancer Research
*Breakthrough Breast Cancer
*Breast Cancer Campaign
*Children with Cancer UK
*Chief Scientist Office
*Economic and Social Research Council
*Leukaemia and Lymphoma Research
*Ludwig Cancer Research
*Medical Research Council
*Public Health Agency
*Roy Castle Lung Cancer Foundation
*National Institute for Social Care and Health Research
*Yorkshire Cancer Research
*The Association of the British Pharmaceutical Industry (ABPI) is also a member to recognize the importance of collaborating with pharmaceutical companies.
*The partners each spend at least £1million per year on cancer research in the UK and these funds are allocated by an independent peer review. Most of the partners will submit data on their projects to the NCRI Cancer Research Database every year as well as share the date with the other partners and the International Cancer Research Partnership.
*The partners pay an annual subscription which supports the core work of the NCRI.
*The NCRI does also work with organizations that do not meet their funding threshold, for example other cancer charities funding research projects or organizations working in diseases other then cancer but which have an overlapping interest of research.
* The NCRI partnership has a governing board which has meetings three times per year. This board is made up of senior members of the various NCRI partner organisations as well as lay representatives and other key stakeholders. You can find info on their members and some minutes of past meetings on their website if you would like to have a look, the link is at the bottom of the page.
*The core business of the NCRI is funded by the partnerorganizations which make annual contributions to cover the costs. Initiatives are budgeted separately and funded by acombination of partner members and occasionally by non partner organisations who have an interest in that particular area.
*The NCRI does not directly fund research as their purpose is to ensure collaborated between the various funders rather then tocentralize the process of funding.
*The partners all have their own goals and their own strategiesto guide their way of funding and deciding which activities they take on but the NCRI does have a complimentary agenda as well.
The NCRI Strategic Plan 2012-2017
The strategic plan is aimed at renewing the commitment of the partners to keep working together and build on the various successes of the NCRI. There are still areas of research which are lagging behind so the NCRI seek ways of helping to advance these to add value to cancer research.
The NCRI has different strands of work in place to support coordination of cancer research in the UK:
*NCRI Clinical Studies Groups – These provide a forum for researchers to develop trials and build a strategy within their area of expertise
*NCRI Cancer Conferences – The NCRI hold a conference each November with speakers from the UK and abroad showcasing cancer research
*NCRI Cancer Research Database – They collect and analyzedata from the partners to try to understand how the funding is spread out across the various areas of cancer research
*Research Initiatives – A programme of initiatives, which is constantly evolving, supports the development of research
Supporting Cancer Research:
Topics are sometimes identified in which there are research needs that can be addressed collectively and the board may agree to exploratory work by either the Secretariat or a partner organization. This could lead to a project within an existing resource or the creation of a separate one. Many of these projects are aimed at coordination among researchers:
*Prevention – The National Prevention Research Initiative (NPRI) is aimed at increasing research activity with the creation of funding opportunites
*Early Detection – The National Awareness and EarlyDiagnosis Initiative (NAEDI) tried to boost research into the early detection of cancer by bringing funders together
*Cancer Intelligence – The National Cancer Intelligence Network (NCIN) is aimed at improving and using information on cancer patients in the NHS for research and analysis purposes
*Radiotherapy – CTRad links UK experts to allow national leadership to support the development of research intoradiotherapy
*Biobanking – The Confederation of Cancer Biobanks (CCB) works on a common vision for biobanking in the UK and coordinates the activity
*PET Imaging – The NCRI Positron Emission Tomography (PET) Core Lab provides accreditation for sites participating in PET trials by providing quality control
*Surgery – A report from the NCRI is able to identifyopportunities for surgeons to become engaged in research
*End of Life Care – The UK End of Life Care Research Interest Group encourages research into end of life care as well as collaboration on the subject.
*Grantsmanship – There is a gateway website which helps researchers identify funding sources and access advice from experts on the application development process for grants
There are ways for you to find out how the money you donate to a particular charity is spent. I’ve done a piece of CRUK’s spending in the past – all of the information for which was found in the CRUK Annual Review.http://pennysophia.blogspot.co.uk/2013/08/cancer-research-uk-yearly-progress.html?m=1
If you are ever unhappy and feel like research into an area of cancer isn’t being done then I would really recommend contacting the NCRI and seeing if they can point you in the right direction to reassure you. Obviously there are areas that are still underdeveloped but I am confident that this will change over time and the areas that don’t receive much funding at the moment will be reached in time. Obviously cancers that affect more people, i.e. breast and bowel do receive a lot of funding as they do affect a large amount of people.
If you would like more information on the NCRI and what they do please visit their website http://www.ncri.org.uk/