Select Committee on Science and Technology Sixth Report


(a)We welcome the new cancer referral guidelines for the primary care sector. The Government must monitor the implementation of the guidelines and their effectiveness in supporting diagnosis of cancer in the primary care sector and referral to cancer specialists (paragraph 20).
(b)While we recognise that the introduction of the two-week standard is an important step towards improving prompt access to diagnosis and treatment, and will help to reduce patients' anxiety, the time to provision of treatment would be a more relevant standard. We recommend the introduction of challenging targets to reduce the time between GP referral and commencement of treatment (paragraph 23).
(c)The introduction of a fast-track system for people suspected of having cancer will increase the demand on an already over-stretched service. Thus it must be matched by the provision of a greater capacity in radiology and pathology if the management of cancer patients is to improve (paragraph 24).
(d)Strong research programmes are needed to identify and develop cost-effective screening techniques for the more common cancers. (paragraph 26).
(e)We recommend that the Government and the National Screening Committee evaluate high speed and precise techniques with a view to commencing large-scale trials for CT cancer screening. This would require the NHS to purchase state-of-the-art diagnostic equipment (paragraph 27).
(f)We recommend that the Government increases the number of specialist surgeons for each type of cancer to a level where most cancer surgery is performed by appropriate specialists. We also recommend that it supports surgical oncological research (paragraph 30).
(g)We recommend that the Government address the service problems in the delivery of radiotherapy and actively encourage research into radiotherapy. We recommend that IMRT and 3D-CRT equipment should be made available in all cancer centres together with trained personnel (paragraph 32).
(h)It is unacceptable in a National Health Service founded on the principles of equity that drugs which can improve the length and quality of cancer patients' lives are only available to some of those who could benefit. (paragraph 34).
(i)Nevertheless, we remain unconvinced that guidance from NICE alone will ensure national availability of recommended treatments. We recommend that the Government ensures that its follow-up procedures require all Health Authorities to provide anti-cancer treatments which are approved by NICE where the patient's consultant regards them as clinically appropriate and prescription is within the guidelines set by NICE (paragraph 35).
(j)We recommend that full additional funding of NICE-approved treatments be provided to all Health Authorities, regardless of whether an authority was already providing the treatment prior to its approval by NICE (paragraph 36).
(k)We see no reason why guidance from NICE on cost-effectiveness of treatments cannot be delivered at the same time as marketing approval is given. We recommend that the Government find better ways of operating NICE so that guidance on drug treatment can be issued by NICE at the same time as the granting of marketing approval (paragraph 37).
(l)The low level of use of the latest anti-cancer drugs in the UK compared to other European Countries disadvantages cancer patients in the NHS and discourages pharmaceutical industry investment in clinical trials. We recommend that the Government reviews the arrangements for the provision of anti-cancer drugs to NHS patients to ensure that the best drugs are available, to all those patients who may benefit, as quickly as possible (paragraph 38).
(m)More clinical research is needed to determine the benefits that patients derive from complementary therapies. We recommend that the Government seeks guidance from NICE on the cost-effectiveness of complementary therapies for cancer care to ensure consistency of provision across the NHS (paragraph 42).
(n)We believe that cancer care networks should also provide an essential resource for clinical research and that research based on cancer networks should be given more emphasis than was evident in the Calman-Hine report itself. Clinical research should be an explicit part of the remit of both cancer centres and their associated units. (paragraph 44).
(o)We recommend that the National Cancer Plan, which must incorporate the development of a research ethos in cancer centres, include built-in milestones and explicit estimates for the additional capital and recurrent financial resources necessary to deliver the required elements of:

•  organisational change;

•  additional specialist and support staff;

•  equipment, and

•  new treatments and therapeutic techniques (paragraph 52).
(p)We welcome the introduction of national guidance on improving outcomes for cancer patients and the initiatives to monitor delivery. It is, however, wholly unacceptable that delays in implementing the guidance on treatment should be the result of tardiness on the part of NICE or contrary funding decisions on the part of Health Authorities (paragraph 55).
(q)We are concerned that in the UK there are shortages of skilled personnel in key areas of science — such as bioinformatics. We recommend that the Government identify and remedy these skill shortages (paragraph 63).
(r)We recommend that assessment of research quality and provision of research funding in the clinical and translational arenas take account of their long-term nature and gives due recognition to these important activities, particularly in the field of oncology (paragraph 69).
(s)We recommend that the Government and the National Cancer Director ensure that clinical research scientists working in translational research have sufficient time available, away from their NHS responsibilities, to allow them to carry out research (paragraph 70).
(t)Increasing the number of adult cancer patients entering clinical trials must become a high priority. We recommend that the Government sets challenging and specific targets for the proportion of eligible adult cancer patients entering clinical trials for all the most common cancers (paragraph 75).
(u)We recommend that stronger safeguards are put in place to ensure that informed consent is obtained from all patients before enrollment into a clinical trial (paragraph 76).
(v)We recommend that the Government reviews NHS procedures for obtaining patients' informed consent for participation in clinical trials, including increased use of research nurses and the voluntary sector (paragraph 77).
(w)We recommend that the Government produce and maintain a publicly accessible, comprehensive database of all clinical trials, including those funded by industry, currently recruiting patients, using Cancernet as a model. This will need to be advertised widely. The Government must also encourage GPs and hospital consultants as well as healthcare organisations such as community health councils to advise patients of available trials relevant to their condition (paragraph 80).
(x)We recommend that the Government significantly increases the numbers of oncologists in training, setting a ten-year target to ensure that there are sufficient numbers of consultant oncologists to bring patient workload into line with that in comparable countries. We also recommend that the Government ensures that, as the new consultants qualify, new academic and clinical consultant posts are created (paragraph 85).
(y)We recommend that the level of remuneration for academic medical careers should be reviewed to ensure that they are competitive with NHS-based careers. We further recommend that, in addition to the specialist training requirement, oncologists should be encouraged to undertake a period of research (paragraph 86).
(z)There is widespread agreement that the poor state of the infrastructure for cancer treatment and research in the NHS is a serious barrier to clinical research. The Government must act quickly to address this through investment in the necessary staff, training, equipment and buildings (paragraph 91).
(aa)We recommend that the Government ensures that ethical, safety and financial approvals for clinical trials are administered more effectively so that trials can proceed as quickly as possible after the submission of protocols. We believe that for multi-centre trials ethical approval from one of the MRECs should be sufficient. The Government should benchmark its performance in this area against other European countries (paragraph 95).
(bb)We agree with the London School of Hygiene and Tropical Medicine: "Cancer registration in the UK is too valuable as a public health resource for its organisation and funding to continue in their current haphazard fashion: this is the result of historical accident rather than strategic planning" (paragraph 98).
(cc)We recommend that, as a matter of urgency, the advisory group on patient confidentiality should address the concerns posed by the 1998 Data Protection Act regarding the registration of cancer (paragraph 109).
(dd)We recommend that the Government should introduce legislation to make the registration of cancer a legal requirement, both to ensure the completeness of cancer registry data and to ensure access to those data for legitimate research purposes (paragraph 112).
(ee)We would welcome initiatives to extend research on the links between ethnicity, socio-economic conditions and cancer incidence and survival (paragraph 114).
(ff)We recommend that palliative care research should be conducted as a complement to research into cancer treatments and should receive Government funding (paragraph 117).
(gg)We recommend that all Government-supported cancer research committees include patients' representatives as full members and that the Government provides resources to ensure proper training and support for patients' representatives (paragraph 119).
(hh)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 (paragraph 129).
(ii)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 (paragraph 130).
(jj)We recommend that the MRC accelerate its procedures for assessing and approving phase III clinical trials (paragraph 133).
(kk)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 (paragraph 134).
(ll)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 (paragraph 140).
(mm)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 (paragraph 142).
(nn)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 (paragraph 143).
(oo)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 (paragraph 144).
(pp)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. 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. (paragraph 145).
(qq)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 (paragraph 149).
(rr)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 (paragraph 151).
(ss)The twelve centres of cancer research excellence that we propose 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 (paragraph 154).
(tt)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. 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 (paragraph 155).
(uu)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 (paragraph 156).
(vv)We recommend that the Government introduce a National Cancer Research Bill to —

•  establish the National Cancer Research Institute and to place its funding on a statutory basis;

•  set out the goals, objectives and functions of the National Cancer Research Institute, and

•  place the registration of cancer and pre-cancerous diagnoses on a statutory footing (paragraph 157).

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