House of Commons - Science and Technology

Select Committee on Science and Technology Sixth Report

ORGANISING AND CO-ORDINATING CANCER RESEARCH

147. The diversity of research funding and organisation creates problems of co-ordination, a fact which the Government recognised in Challenging Cancer.[246] Some considerable effort has been made to facilitate and improve co-ordination between the various cancer research organisations. The UK Co-ordinating Committee on Cancer Research (UKCCCR) was established in 1970 to help the major funders co-ordinate their activities, particularly in the area of clinical trials. More recently the Cancer Research Funders' Forum (CRFF) was set up to co-ordinate research at a strategic level.

THE UK CO-ORDINATING COMMITTEE ON CANCER RESEARCH

148. The UKCCCR, initially set up by the MRC, the ICRF and the CRC, now also includes the LRF. Breakthrough Breast Cancer, the Institute of Cancer Research, the Ludwig Institute, Marie Curie Cancer Care and Tenovus are associate members. The Health Departments have observer status.[247] The UKCCCR has an independent chairman and is responsible for bringing together networks of cancer researchers with specific interests in order to develop new ideas and proposals for clinical cancer treatment, prevention and screening research. The UKCCCR members have all expressed their approval of the organisation's rôle and effectiveness in developing ideas for and co-ordinating clinical trials.[248]

THE CANCER RESEARCH FUNDERS' FORUM

149. The CRFF was founded in late 1999 following a 'cancer summit' convened by the Prime Minister at 10, Downing Street in May 1999. Its membership includes the major cancer research charities, the Department of Health and the MRC. The MRC both chairs and provides the secretariat for the CRFF. There is currently no industrial participation.[249] The task of the CRFF, which met for the first time in January 2000, is to "consider strategic issues across the whole of cancer research, identify the obstacles to progress and forge collaborative approaches to tackle them".[250] It has already started some activities including the development of a national database of on-going cancer research in the UK, a review of prostate cancer research, the development of a database of DNA and tissue resources, an investigation of new ways of supporting DNA and tumour banks, and discussions on NHS infrastructure for research.[251] Since the pharmaceutical industry is collectively the largest source of funds for cancer research in this country, it is unlikely that the CRFF can operate at maximum effectiveness without industrial representation and participation. We recommend that the chairman of the CRFF be a highly respected clinical scientist with policy experience who operates independently of the secretariat provided by the MRC. We also recommend that CRFF membership is widened to include representatives of the pharmaceutical and other related industries.

150. The ICRF suggested that the CRFF could be a research funding body.[252] We agree that for the CRFF to have a major impact on the progress of cancer research it would need to have its own financial resources. We note that the Government has committed £1 million for prostate cancer research as a result of the CRFF initiative.[253] While we welcome this initial response on the part of the Government, and the additional investment in prostate cancer research, such allocations go against the accepted culture in this country of research funding bodies identifying priorities and allocating their own funds to high priority activities. The Haldane principle, which we wholly endorse, and under which the Research Councils operate, ensures that research funding is separated from political influence at all but the highest levels. We believe that Government should focus on creating the appropriate organisational structures and putting the overall funding in place, rather than become involved in day-to-day decisions on which research programmes should be funded.

Setting Strategies and Priorities in Cancer Research

151. Notwithstanding the very recent creation of the CRFF, cancer research in the UK remains largely a collection of disparate activities, funded and delivered by a wide range of organisations without a single vision. While the Government can not, and should not, exert control over research programmes funded by voluntary organisations, it is in a good position to help all the relevant organisations work together more efficiently in a well-planned, well-funded and effectively co-ordinated programme. We recommend that a cancer research strategy should become an integral part of the National Cancer Plan which is to be published shortly. This strategy should be developed in consultation with cancer patients, research funders, and research practitioners, including relevant sectors of industry. The Research Plan should:

have as its objective a reduction in cancer incidence and mortality and an improvement in outcomes for cancer patients, in terms of successful treatment and quality of life;

include a long-term blueprint for the required organisational structures and funding;

cover the delivery of high quality basic, translational, public health and clinical research, and

address research into the causes, nature, prevention, detection and treatment of cancer and palliative care.

A National Cancer Institute

152. The NCI in the USA, part of the National Institutes of Health, was established in 1937 and has become the Federal Government's principal agency for cancer research and training. The National Cancer Act of 1971 broadened its scope and responsibilities and created the National Cancer Program. Over the years, legislative amendments have maintained the NCI's powers and responsibilities and added new mandates on information dissemination as well as a requirement to assess the incorporation of state-of-the-art cancer treatments into clinical practice. The NCI is funded directly from Congressional appropriations.

153. At the outset of our inquiry we were struck by the dominance of the NCI, which we visited early in our inquiry, in the cancer research field. We considered whether this would provide a good model for cancer research in the UK. It supports intramural research at its major facility in Bethesda, Maryland and a large programme of extramural research through grants to other institutions across the USA and in other countries. A major factor in NCI's success is the size and stability of its budget. This reflects the extraordinary degree of public support for research into cancer in the US. We had a direct demonstration of this commitment during our visit to the US Congress and in particular through our helpful discussions with Senator Connie Mack and Congresswoman Rosa De Lauro.[254]

154. We visited several centres of cancer research excellence in the UK. They operate in different ways with very different levels of Governmental and charitable financial support. We heard from most of them that the key elements of a successful cancer research centre include highly skilled and motivated people, a close, if not seamless, interface between laboratory science and clinical research, and stable, long-term funding for academic and clinical research infrastructure. The Minister told us that she anticipated that clinical research would be expanded across the country "making research reflect the treatment and service networks".[255] We agree that patients in all cancer treatment networks across the country should be entered into clinical trials but we doubt that it would be possible or even desirable to create centres of research excellence and leadership in every cancer centre. The twelve centres of cancer research excellence that we propose (see para 144) should each have a high level of clinical research activity and should have basic laboratory research and translational activities. Each research centre should be based in one of the cancer treatment centres currently being established under the Calman-Hine recommendations.

155. Most of our witnesses were opposed to a new "bricks and mortar" type of national cancer research institute for the UK.[256] The Department of Health believes that "improving the links between existing centres and creating a national network would probably be more effective".[257] The ICRF believes that such a centre would detract from the existing high quality centres of excellence and proposes that a "virtual National Cancer Research Institute" could be established by the centres working closely together. It also agreed that ICRF institutes would cooperate with such an organisation.[258] The CRC agrees, recommending that such a "virtual" institute should be established to concentrate on co-ordination between the excellent research centres. The Association of Cancer Physicians (ACP) has provided us with a paper setting out a possible rôle for a national cancer research institute recommending that such an institute should be "virtual" in that it should not have its own clinical research facilities but should co-ordinate the efforts of others and provide central funding.[259] Professor Ponder proposed something similar.[260] We agree. We are unconvinced that to select one of the UK's existing centres of cancer research excellence for development into a National Cancer Institute on the model of NCI in the United States, as suggested by some of our witnesses, would improve cancer research in the UK.[261] The desired quality and volume of cancer research in UK can be better achieved by increasing substantially the investment in existing centres of excellence so that they can compete at the highest international level. These activities should be co-ordinated with visionary leadership and clear identification of national priorities, and subject to rigorous peer review.

156. We recommend the creation of a new National Cancer Research Institute to set national research priorities and to co-ordinate and fund cancer research in the UK. It should —

Co-ordinate cancer research in the UK by —

• developing a cancer research strategy and identifying gaps in research funding;

• ensuring integration and complementarity between the Calman-Hine cancer care networks and research networks, and

• assuming the responsibilities of the UKCCCR and the CRFF in order to reduce unnecessary duplication of effort;

Set priorities for clinical research;

Set and implement priorities for cancer registration strategy by —

•

Managing and funding the National Cancer Registry, and

• Co-ordinating and funding regional cancer registries;

Determine and set out the case for appropriate levels of Government funding for cancer research;

Receive all Government funds for cancer research and allocate them to extra-mural research programmes and projects, on the basis of appropriate mechanisms of peer review;

Make available assistance in peer review to charities funding cancer research;

Produce and maintain Good Clinical Practice guidelines and oversee adherence to them;

Provide guidance and co-ordinate training for oncologists;

Issue and maintain guidance, subject to regular review, on the diagnosis of malignancy in general practice;

Co-ordinate the provision of appropriate tumour, tissue and serum depositories for cancer research, and

Communicate with the public on issues related to cancer.

The National Cancer Research Institute should operate at arm's length from Government under the authority of its own Royal Charter, accountable to Parliament through the Minister for Science. We do not envisage it as a large organisation but as a small authority with a physical existence. It should not have its own intramural research programme, other than through the cancer registries, nor should it be based in an existing research facility.

A National Cancer Act

157. The National Cancer Act of 1971 in the USA created statutory arrangements for the advancement of cancer research and for the development of the NCI.[262] We are persuaded by what we heard during our visit that the long-term continuity of purpose underwritten by that Act has served cancer research in the USA well. The current UK Government has identified cancer as a high priority for health and research spending and we applaud it for doing so. As Ministers and governments change, however, so do political priorities. We are keen to ensure that the new provisions we have recommended for cancer research benefit from the same continuity of purpose that has served the USA so well. We recommend that the Government introduce a National Cancer Research Bill to —