Select Committee on Science and Technology Appendices to the Minutes of Evidence


APPENDIX 6

Memorandum submitted by the Christie Hospital, NHS Trust

THE RESEARCH BASE, REVIEW AND FUNDING OF THE NHS CANCER PLAN AND ITS DELIVERY TO DATE

  It is too early to comment about the delivery of the National Cancer Plan. Certainly as far as research is concerned most of the Networks are only just beginning to take shape, with key individuals being recruited.

  In the broader context it would appear that the first tranche of money £255 million, has already been distributed to the Regional Health Authorities as part of the extra £580 million devoted for delivery of a National Cancer Plan. A large amount of this money has gone towards funding of new drugs such as Taxanes, Fludarabine, Herceptin and the tyrosine kinase inhibitor STI 571 or Glivec. The remaining proportion of money has only translated into modest increases in staffing numbers and there certainly is no discernible improvement in service. The funding for new drugs has continued on a postcode basis despite this being counter to the main philosophy of the National Cancer Plan.

  The money was given to individual health authorities ahead of establishment of Networks in a number of areas, ahead of publication of core guidelines for management of specific tumour groups and ahead of establishment of research networks. It is my view that this premature release of money resulted in an ad hoc use of the money without due attention to the most important endpoints in cancer which are quality of life and survival of patients. This devolution of responsibility for implementation of the Cancer Plan to health authorities without appropriate guidelines and prior to the setting up of robust networks has resulted in arbitrary decision making and persistence of postcode prescribing habits. For example in Manchester, Herceptin (antibody against the therapy of breast cancer) was only funded by Manchester Health Authority after patient groups took this story to the press. Manchester Health Authority refused to fund Herceptin despite NICE approval and ultimately the Regional Health Authority had to force them to do so. I can see a similar situation developing for the new anti leukaemia drug Glivec.

  A further problem in the implementation of the National Cancer Plan is the imminent dissolution of Regional Health Authorities. Who will actually implement the Cancer Plan, the PCTs or the new Strategic Health Authorities? This has not yet been clearly defined. This area of uncertainty at a time of great change within the National Health Service and Cancer does not bode well.

  My own view is that aspects of the National Cancer Plan are excellent. Establishment of core guideline, network structures and key positions should have preceded release of large tranches of money. The first tranche of money is now probably "lost", but one would hope that the next release of money will occur when guidelines and appropriate people are in place to actually deliver.

PROGRESS IN DEVELOPING THE VIRTUAL NATIONAL CANCER RESEARCH INSTITUTE, ITS PRODUCTIVITY AND RELATIONSHIP WITH THE CANCER RESEARCH FUNDERS' FORUM.

  Again it is too early to define the productivity of the National Cancer Research Institute. Certainly the establishment of the National Cancer Research Institute and establishment of National Translational Research centres is highly positive. How this will interact with the Cancer Research Funders' Forum is difficult to say. As you know the merger between the CRC and the ICRF will have a major impact on cancer research funding.

THE ISSUE OF CANCER REGISTRATION AND ITS IMPLICATION FOR DATA PROTECTION, GIVEN RECENT DEVELOPMENTS WITH THE GMC AND THE HEALTH AND SOCIAL CARE ACT.

  Cancer registries are central to assessing the outcomes of the National Cancer Plan: the productivity of any research Institute and whether we are improving survival in all tumour groups. It is necessary for Cancer registries to maintain robust databases. Presumably these registries can prevent identification of individual patients; it is my view that they should be exempt from the Data Protection Act. In particular, if we as practising health workers were to ask for consent from every patient for registering them it would take a considerable amount of effort and time and require a large amount of investment. I however wholeheartedly support the need for consent as far as human tissue is stored and utilised. It must be pointed out that without establishing appropriate cancer registries or tissue banks in the UK will not be able to audit outcomes, identity areas, which require improvement. We will not be able to take advantage of the opportunities offered by a revolution in human genomics, without high quality tissue banks.

THE NEW CANCER RESEARCH NETWORKS

  Again it is too early to comment on these as they are very much in their infancy. The fact is that Cancer Networks in the Northwest have yet to be fully established. I think they are an excellent idea, however I am unclear in my own mind what the right balance between centralised clinical research (at the cancer centre) or devolution it to the Cancer units. There is no doubt that participation of patients in cancer trials improves outcomes. To undertake clinical trials however, requires a number of resources including research nurses, data managers and clerical staff. We need these individuals not only to gain informed consent, obtain ethics committee approval but also fill in data sheet forms to evaluate outcomes. A Cancer centre such as the Christie, treating large numbers of patients, with a core staff experienced in undertaking research trials can fulfil these activities efficiently. However, a Cancer unit seeing small numbers of patients would still have to deploy core infrastructure staff to undertake research activities. This may not be cost effective. The correct balance between the Centre and units will be key to the success of any research network. My own view is that for the purposes of Ethics committee approval the whole Network should be seen as one. Once responsible investigating physicians have been identified Research nurses and data managers should go up from the Centre to the Unit to assist in implementing clinical trials and gathering data. This will require a degree of co-operation and flexibility.

Dr Raj Chopra

Senior Lecturer in Haematology/Oncology

3 December 2001


 
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