House of Commons - Science and Technology

Select Committee on Science and Technology Sixth Report

PAYING FOR CANCER RESEARCH

120. The UK has some high quality programmes in basic, translational, clinical and public health research into cancer. Improving this research and implementing the results that come out of these programmes will lead to a reduction in incidence and an increase in survival for those who do develop cancer and a consequential decline in mortality from cancer overall. There will always be calls for the Government to spend more money on research. We believe that the evidence we have received in this inquiry fully justifies such calls. Cancer research in the UK is funded from three main sources: research charities, industry and the Government.

Research Charities Funding

CANCER CHARITIES

121. The cancer research charities support most of the non-commercial cancer research effort in the UK. The two largest cancer research charities, the ICRF (£64 million annually) and the CRC (£61 million annually), between them spend more money on cancer research than the UK Government.[186] Other major cancer research charities include the Association for International Cancer Research, Breakthrough Breast Cancer, the Leukaemia Research Fund (LRF), the Ludwig Institute for Cancer Research, the Marie Curie Research Institute, Tenovus, and Yorkshire Cancer Research, each of which spends between £1 million and £15 million each year on cancer research in the UK.[187] In addition there is a large number of smaller cancer research charities which generally focus their research funding on particular types of cancer or on particular local research centres. In total, the annual charitable contribution to UK cancer research is at least £160 million (at current prices) and probably close to £200 million. This sum demonstrates the exceptional commitment of the UK public to support cancer research and dwarfs the Government's contribution. The Association of Medical Research Charities (AMRC) estimates that charitable spend on medical research (including but not limited to research related to cancer) accounts for 30 per cent of the total in the UK but only 7-8 per cent in the USA and 10 per cent in Europe.[188]

122. The ICRF funds an intramural research programme through long-term support for its own laboratories' clinical units. It directly employs its own clinical and scientific staff and has a major impact on cancer research in the UK.[189] The ICRF's scientific strategy and research programme are constantly monitored and regularly reviewed to a high standard by some of the most respected cancer experts in the world.[190] The CRC funds an extramural research programme through one- to five-year research grants to universities and medical schools and also to four specialist, but independent laboratories.[191] The CRC's prioritisation and peer-review processes both involve internationally respected cancer scientists.[192] The CRC has been responsible for the creation of some of the leading cancer research centres around the UK and, like the ICRF, makes a major impact on the cancer research agenda and community in the UK. The medium-sized cancer research charities also generally operate in one of these modes, supporting either intramural research institutes, such as the Marie Curie Research Institute in Surrey, or providing extramural grants to universities, medical schools and research institutes, as is the case with the LRF.[193]

123. The different approaches to funding cancer research of the CRC and the ICRF permit a diversity of funding and research cultures. The two organisations have a close relationship and each supports the other with scientific and strategic co-operation.[194] We questioned why these two organisations did not merge. They both stressed that their funding cultures, being different but complementary, work well in distinct organisations and that they would be concerned that such a merger might have a negative impact on their fundraising abilities.[195]

124. In general, these large and medium-sized cancer research charities have very rigorous peer review processes and work closely with each other, government, industry and overseas institutions to formulate coherent strategies for their research efforts. The standard of the research they support is high, justifying the generosity of their donors.

125. The CRC estimates that there are some 600 smaller cancer charities.[196] These are often local charities addressing a specific shortage of research facilities in a local medical school or hospital. Others raise funds for research addressing specific cancer types. These charities raise significant funds for cancer research throughout the country and, as the MRC pointed out, "taken together [they] make a considerable commitment to the UK research effort".[197] Their activities also do much to raise awareness of research on a local level and to enable patients and their families to become involved and to contribute to the cancer treatment centres and specialists which they may feel have given them good treatment. As the ICR told us, the diversity of cancer research charities "allows for the coexistence of several complementary, distinct strategies for taking forward research work" which "creates an environment where many strands of research can be pursued and shared simultaneously".[198]

126. There are, nevertheless, some concerns about the quality of some of the research funded by smaller charities and, in some cases, about an absence of peer review to select research projects. The CRC told us that in some cases, it had rejected research proposals as poor quality, only for them to be funded by a local charity, in some cases established by the applicant.[199] Peer review can be a lengthy and expensive process and, particularly for those smaller charities with little in-house scientific expertise or administrative support, can represent too great a burden to be appropriate. It is of course for the charities themselves to determine how best to allocate the funds they have raised but we are concerned that there should be a means of providing peer review for research proposals for those charities that would wish to use it. (We return to this issue in para 156). The CRC allows some other charities access to its administrative systems.[200] Other charities are placing funds and people into ICRF research units. We recognise the importance of continuing the independence and work of the smaller research charities, both in fund-raising and in keeping donors in close contact with the research they support. Nevertheless we welcome initiatives on the part of both the ICRF and the CRC to help smaller charities place their funds into peer-reviewed research activities.

THE WELLCOME TRUST

127. The Wellcome Trust is the largest charity in the world with an annual spend of over £450 million, 90 per cent of which is spent in the UK, and is dedicated to biomedical research.[201] The Trust does not in general directly support human cancer research projects except where "research has a broader relevance to the understanding of biological processes".[202] It takes the view that cancer is a field in which, in the UK, "considerable funds are available from other sources".[203] The Trust has however provided £205 million support for the UK contribution to the Human Genome Project and £10 million for the Cancer Genome Project (see para 62). It is also collaborating with the CRC in the Institute of Cancer and Developmental Biology at Cambridge University. The Trust has also provided £300 million for the Joint Infrastructure Fund (JIF) which is providing much needed university laboratory infrastructure. The Trust's contribution to JIF is directed at biomedical research which includes cancer research, and more recently it has committed a further £200 million to a similar collaborative project with Government. The Wellcome Trust has made, and continues to make, a major financial and scientific contribution to the understanding of cancer through its support for basic cellular and molecular biology. While we disagree with the Trust's view that cancer research is amply funded in the UK, we recognise that the Trust's funding strategy must be a matter for the trustees.

Industry Funding

128. The ABPI estimates that the pharmaceutical industry spends around £500 million each year in the UK on cancer research.[204] This may seem like a very large amount, especially when compared to that spent on non-commercial research, but each new medicine is estimated to take 10 to 12 years and £350 million to develop and bring to market.[205] Most of this investment, at least in the UK, is in clinical research. In terms of basic cancer research, only one major pharmaceutical company, AstraZeneca, has any significant activity in the UK.

129. Our evidence suggests that pharmaceutical companies are increasingly coming to regard the NHS as an unsuitable place to do clinical trials as a result of inadequate infrastructure, standards of care and over-complicated bureaucracy (see para 82). The ABPI also told us that the UK is the second most expensive place in Europe to do clinical trials as a result of increased overhead costs and high charges for standard investigations and treatments made by hospital Trusts which are not charged elsewhere. This seems to include treatment which patients would have received regardless of their participation in the trial.[206] The past six months have seen the introduction of standard overhead charges by NHS Trusts to the pharmaceutical industry which are commonly as high as 40 per cent of the total cost of the research. The ABPI is also concerned about high overhead charges levied by universities when clinical trials are carried out using their facilities.[207] It is, therefore, perhaps unsurprising that the ABPI told us that "the high costs in the UK are giving companies a good reason for taking their trials elsewhere".[208] Thus cancer patients are in danger of losing the opportunity of benefiting from the very high standards of care and treatment that are associated with clinical trials. If the pharmaceutical industry is to be encouraged to do more cancer clinical trials in this country the costs of doing so must be made competitive with those in other countries.

130. Another concern of the pharmaceutical industry regarding clinical trials in the UK involves the Good Clinical Practice (GCP) standards laid down for MRC-funded trials. One aspect of the clinical practice standards for trials is the auditing of data collection. The ABPI told us that the audit standards required of the MRC-supported investigators are not the same as those recommended by the International Conference on Harmonisation (ICH) to meet globally agreed standards for marketing approval.[209] This means that trials carried out in the UK under MRC GCP standards may not meet the requirements for marketing approval in other countries. The MRC did not seem to think that this was a real problem.[210] We note that the ABPI is in the process of discussing this issue with the NHS (but not the MRC) and will be bringing forward proposals.[211] The ABPI is concerned that MRC GCP guidelines do not meet ICH standards and that this is another factor discouraging the pharmaceutical industry from doing clinical trials in the UK. This issue must be resolved. We recommend that, as a matter of urgency, the MRC seek to understand better the ABPI concerns regarding Good Clinical Practice standards in MRC-funded clinical trials, and work with the NHS and the ABPI to find a resolution acceptable to all parties.

Government Funding

131. The Government states that "the MRC is the main route through which the government provides support for research into the basis of and treatment of disease, including cancer".[212] Other than through the MRC, the Government provides underpinning support for cancer research in the NHS through the Health Departments (England, Wales, Scotland and Northern Ireland); and in the universities through the Higher Education Funding Councils (HEFCs).

THE MEDICAL RESEARCH COUNCIL

132. The MRC is one of the research councils which come under the responsibility of the Department of Trade and Industry. In 1998-99 it provided £28.5 million of its £320 million budget for cancer research.[213] This is spent largely in the form of research grants to universities and medical schools, with a small proportion spent in its own institutes, in support of basic, translational and clinical research into cancer. It also provides some £30 million annually for "basic research of direct relevance to cancer".[214]

133. The MRC does not typically fund phase I and II clinical trials in cancer. Several witnesses were critical of the time it could take to secure financial approval for phase III trials, which can be up to two years.[215] Both the Royal College of Physicians and the Association of Cancer Physicians told us that this delay "threatens the originality of the research as well as the resolve of the researchers".[216] The delay also, inevitably, holds up the widespread introduction of new treatments into clinical practice. We recommend that the MRC accelerate its procedures for assessing and approving phase III clinical trials.

134. The MRC told us that its research priorities were set by a procedure which involved its scientific boards, the Health Departments and relevant sectors of industry. Under this process cancer had been identified as one of its highest research priorities and consequently the MRC plans to increase funding in this area.[217] Naturally though, the MRC also has other high priorities and "a national duty to cover all areas of medicine".[218] We respect the need for the MRC to cover a wide portfolio of medical research but believe that its £28.5 million for direct support for cancer research is inadequate. Government investment in a very complex group of diseases that between them cause a quarter of all deaths in the UK demands a much higher level of financial commitment. When compared to the £160 million or more invested through charitable donation, the MRC is not the dominant funder in the UK cancer research community. The CRC states that in the UK there is "too great a reliance on funding from the charities".[219] Moreover, as the Paterson Institute told us, "charitable funding is of a precarious nature and should not be relied on to be the spearhead of our national effort".[220] The ICRF believes that there is "inadequate UK Government funding of cancer research, perhaps in part due to an opportunistic reliance upon the continuing generosity of the public".[221] We agree. The generosity of the public in making voluntary donations to cancer research charities demonstrates the high priority the public places on this subject. It is not an excuse for the Government, or the MRC, to abdicate their responsibility in this area. We asked several witnesses for estimates of the funding required for research and, while estimates varied, most responded with a figure of around £200 million.[222] The Government should increase funding for direct support of cancer research to at least a level to match that provided by research charities. We recommend annual expenditure dedicated to cancer research of at least £200 million per annum at current prices, not including funds from NHS R&D or the Higher Education Funding Councils.

THE HIGHER EDUCATION FUNDING COUNCILS

135. The Higher Education Funding Councils for England, Wales and Scotland provide university infrastructure support and academic salaries which underpin Research Council and charity-sponsored research.[223] There are similar arrangements in Northern Ireland. HEFC awards for research support to universities are made on the basis of the RAE which assesses research quality and quantity in departments and makes awards on a formula basis. This underpinning support is essential since Research Council and charity grants only cover the costs of the research directly attributable to a single research project. Research Councils do support a small element of these costs but the major cancer charities generally do not.[224] The state of university research infrastructure in the UK has been a concern to us for some time.[225] The Research Councils and The Wellcome Trust have recently committed £600 million and the HEFCs £150 million to the JIF to address this problem. While the JIF is certainly welcome, it is far from certain that it will be enough to address fully the concerns of university researchers. Lord Winston told us that "the universities are falling apart structurally".[226] The CRC, which alone funds more cancer research in universities than the MRC, told us that the JIF "which itself is heavily dependent on The Wellcome Trust's charitable monies, has helped with regeneration of some research facilities,[but] it is clear from the major imbalance between the available funds and the volume of bids that further major investment is needed".[227] We note the recent Government and Wellcome Trust initiative to improve the situation further and will examine this more closely when the details are available.[228]

136. Universities employ a large group of key cancer researchers using funding from the HEFCs. These academic posts are essential for the success of basic, translational and clinical cancer research. Academic salaries have become increasingly uncompetitive in comparison with equivalent posts in industry and in academe overseas, and the career structures are poor. Researchers often have to rely on short and fixed-term contracts for five or more years before permanent employment can be secured. Lord Oxburgh, the Rector of Imperial College, told us that "for people to go into most of the research posts we have available in our universities now cannot be entirely rational, simply because the prospects are so poor... faced simply with the uncertainty and levels of salaries it is too much to retain them".[229]

THE HEALTH DEPARTMENTS

137. The UK Health Departments have responsibility for maintaining research infrastructure in the NHS. The great majority of this is funded through the Department of Health (England). The Department of Health's budget for R&D in 1998-99 was £484 million, which included £75.5 million (15.6 per cent) for cancer research (see table 4).[230] In addition, a total of £8.3 million was spent on cancer research by the Welsh, Scottish and Northern Ireland Health departments.

Table 4

Department of Health R&D Expenditure on Cancer, 1998-99 (£m)
Support for NHS Providers	62.9
Central and Regional Programmes	4.2
SUB-TOTAL NHS CANCER R&D	67.1
Policy Research Programme	2.1
Other	6.3¹
Total	75.5
¹ Department of Health ad hoc R&D budgets on radiation, £2.2 million; National Radiological Protection Board, £4.1 million. Source: Department of Health, Ev. p. 25.

138. The Department of Health's £75.5 million R&D programme for cancer includes £62.9 million for 'R&D Support for NHS Providers' (also known as Culyer funding). This support dominates the Department's spending on cancer research. This funding is given directly to health care providers (NHS trusts and primary care groups) to "provide support for research funded by Research Councils and charities which takes place in the NHS". For the most part this means clinical trials.[231] It is also used to support research funded directly by the NHS. It does not support commercially-funded trials unless they are primarily of public, rather than commercial, benefit.[232] This funding provides research service support which includes the "additional patient care costs associated with the research" such as "extra blood tests, extra in-patient days and extra nursing attention".[233] It does not cover those treatment costs which would normally be incurred if the trial treatment was being delivered outside a trial: these costs should be met from NHS patient care funding mechanisms, although where trials are for particularly expensive treatments, special arrangements for NHS Executive funding can be made. The Institute of Cancer Research is concerned that funding for treatment costs is difficult to obtain, often because purchasers are reluctant to pay for treatments not yet proven to be effective.[234]

139. We have already discussed some of the problems with the state of the infrastructure for research in the NHS (see paras 81-91) and it is clear that the level of investment by the Department of Health for the Support of NHS Providers is inadequate to underpin an effective national programme of clinical research. The Institute of Cancer Research told us that large scale clinical trials with expensive treatments cannot be funded without increased NHS R&D funding: "it is dangerous to be almost entirely reliant on pharmaceutical funding for this type of trial, as important health economic issues often fail to be addressed".[235] The need for more oncologists, pharmacists, research nurses, pathologists, data managers and other specialist staff, IT equipment, and diagnostic and therapeutic equipment for research is clear. Professor Sikora, of Pharmacia Corp., estimated the annual financial need for enhancing clinical cancer research infrastructure to be in the region of £100 million.[236]

140. The actual processes for allocation of R&D Support for NHS Providers (Culyer money) seem opaque. The Department of Health told us that these funds are allocated "in the form of three-year funding agreements with NHS providers". Of the £62.9 million spent on cancer in 1998-9, £17 million was spent at the Royal Marsden and £10 million at the Hammersmith Hospital but we have seen no justification as to why over 40 per cent of the NHS Support for NHS Providers for cancer research was allocated to just two hospitals. Professor Ponder told us that the NHS says that his clinical department in Cambridge is allocated Culyer funding of £400,000 per year for research support, but despite being head of the department, he was not able to direct these funds to research purposes as the money was absorbed into overall Trust expenditure. Even if he did have access to those funds, the allocation had not kept pace with the expansion of research activities in his department.[237] Further, he was concerned that despite £100 million of recent investment in basic cancer research in Cambridge, there is no route for him to apply for NHS R&D funding to build the clinical infrastructure that is now required. Similar concerns were raised with us during our visits to UK cancer research centres.[238] The conviction of many witnesses and of those we met on visits is that most of the NHS R&D funding was disappearing into general support for NHS hospitals and that little of it was actually made available for research purposes. This means that of the £112 million that the Government claims to spend on cancer research, more than half is effectively unaccounted for and may not be spent on research at all. This situation is deeply unsatisfactory.

141. At Belfast City Hospital, we were told that the Northern Ireland Health Department R&D office had stopped the R&D support process that operated elsewhere in the UK. As this process was seen as scientifically unaccountable, Northern Ireland had instead identified "Recognised Research Groups" which were performing research relevant to the NHS to a high standard.[239] Five-year funding has been awarded to these groups after rigorous quality assessment. These funds are delivered directly to the research groups (one of which is focussed on cancer), rather than to institutions, thereby avoiding the risk of the funds being used for general NHS purposes. Both the NHS Trusts and clinical researchers concerned valued the new system. We commend this as a useful model for the rest of the UK. It provides clarity of purpose and transparency in resource allocation. In particular, identifiable and peer-reviewed research can be seen to be directly funded by NHS R&D, in direct contrast with the situation elsewhere in the UK. In broad terms what has been achieved in Northern Ireland is the identification of real money which can then be used in a manner appropriate to local research requirements.

142. The Department of Health is currently reviewing and changing the way that R&D Support for NHS Providers will be allocated. From 2001, these funds will come through a new budget: 'NHS Support for Science'.[240] It is proposed that NHS Support for Science funding will be allocated on the basis of an "activity and cost model" which is currently under development.[241] While this represents an improvement on the current system, allocations of NHS R&D resources should include an element of research quality assessment. Even under the proposed scheme, the awards will continue to be made to NHS Trusts rather than directly to research groups, as is being done in Northern Ireland. Direct allocation to research groups would reduce the risk of funds being diverted away from research purposes. We recommend that decisions on NHS Support for Science awards include an element of scientific quality assessment as well as the proposed activity and cost model. We further recommend that awards are made directly to research groups rather than to NHS Trusts.

143. Some leading cancer research centres, notably the Royal Marsden and the Hammersmith Hospitals, have large NHS R&D support allocations, but there are wide variations and other centres of excellence are struggling with much lower levels of infrastructural support for clinical research. The new activity and cost model for assessing research support needs which has been proposed risks limiting any expansion of clinical cancer research in those centres: grant awarding bodies and industry are less likely to place grants with centres where the infrastructure for clinical research is inadequate, but under current proposals, the NHS Support for Science awards will be made on the basis of current research activity. Under a strict interpretation, this mechanism could represent a bar to expansion in clinical research and could serve to concentrate funding only in existing centres of research excellence, to the detriment of flexibility and emerging areas of research. We recommend that allocations of NHS Support for Science should be made in a way that permits an expansion in clinical research in both existing centres of research excellence and in emerging centres.

144. We recommend that annual NHS R&D funding for cancer research support be increased by £100 million immediately. This extra funding should be spread across the UK to ensure that approximately twelve large centres of cancer research excellence are developed, capable of delivering a volume of clinical research similar to or greater than that currently being delivered at the Royal Marsden Hospital. These centres and associated units should be closely linked with basic and translational cancer research laboratories.

Overall UK Government Cancer Research Funding

145. The total annual UK Government funding for cancer research of approximately £112 million (a combination of MRC funding for cancer research and NHS R&D support for clinical cancer research) is low compared to that made by Governments in other advanced nations. This is particularly true when comparison is made with the USA, where the NCI received some $2.896 billion in financial year 1999. The core budget request for the NCI for the financial year 2000 is $3.158 billion, continuing the recent trend of significant annual increases.[242] As we observed when visiting the USA, requests for increases in federal funding for cancer research are met with enthusiasm from politicians and the public alike.[243] Given the substantial sums that are donated to cancer research charities in the UK, we believe that the British public is just as enthusiastic to find solutions for cancer and would be supportive of much greater public investment in this area. Although exact comparisons with the USA are difficult because of the different ways in which the various elements of the UK and USA programmes are funded and organised, it is still clear that the UK Government is not even close to making an equivalent per caput financial contribution to cancer research. Two of the leading research centres we visited in the UK (Belfast and Glasgow) currently receive more funding from the US Government through the NCI than they do from the UK Government.[244] Most UK cancer researchers receive far more support from the research charities and the pharmaceutical industry than they do from the Government. We believe that this imbalance is unhealthy. Notwithstanding the Government's wish to partner and co-operate with cancer research charities, if it does not fund research then the research which it wishes to see will not be done.[245] Cancer research charities cannot and should not be expected to fund research as part of a national strategy. The Government has abdicated its responsibility for cancer research and has by default placed the research agenda in the hands of charities and industry.

146. The increases in Government funding for direct and infrastructural support for cancer research that we have recommended would raise the total from £112 million to around £380 million per annum. While this would still not match the USA on a per caput basis, it would enable the UK to develop better infrastructure and to pursue a much greater volume of research, to attract greater investment from pharmaceutical companies, to take its proper place in tackling a major public health problem and, crucially, to improve the prognosis for cancer patients.

186 Ev. pp. 81 & 96. Back

187 See Ev. pp. 261 & 291. Back

188 Ev. p. 377. Back

189 Ev. p. 80. Back

190 Ev. p. 82. Back

191 Ev. p. 96. Back

192 Ev. p. 97. Back

193 Ev. pp. 261 & 270. Back

194 See, for example, Ev. pp. 85, 92-93, 101. Back

195 Ev, p. 85; Q. 334. Back

196 Q. 336. Back

197 Ev. p. 28. Back