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


Memorandum submitted by Macmillan Cancer Relief

  As you may know, Macmillan Cancer Relief and CancerLink submitted two separate memoranda to the Committee in March 2000. Since then, the two organisations have joined together. There are four main points we wish, as a combined view, to draw to your attention:

    (1) The priorities for cancer research should be actively influenced by the views of cancer patients and their carers. Patients and carers have experiential knowledge of living with cancer and should be involved and supported as active participants in research, rather than treated as passive subjects. Greater priority should be given to research that focuses on improved quality of life, rather than simply measuring survival rates. It is also important that cancer patients and carers influence the way the results of research are communicated so that messages are appropriate and public expectations are responsibly managed. Our own survey of press coverage of cancer demonstrates that over-exaggerated reports of cancer research results, particularly those relating to new "cures", can inappropriately raise patient expectations.

Through CancerLink and the CancerVOICES project, we are building contacts with patients interested in being involved in research and planning to develop training to equip lay people to take part in research. However, we need increased support and funding from Government and other cancer research organisations so that opportunities for involvement are better promoted, cancer patients and carers are appropriately resourced and supported, researchers and other professionals understand how to facilitate lay involvement, and there is a network of individuals with an experience of cancer whom research organisations can easily access.

    (2) The Government should accord higher priority to funding and promoting evidence-based cancer care research related to the needs of cancer patients resulting from the impact of the disease and its treatment. Scientific and technological research is only one side of the picture. Macmillan has developed a dedicated research and education programme including two Practice Development Units, Education Units in six universities, 12 full-time academic doctors and costing £2 million per annum. This programme supports the proactive dissemination of research findings and the continuous education and training of professionals to help them apply research findings in their daily clinical practice. Much more could, however, be achieved if the Government accorded greater priority and funding towards research of this type.

    (3) One example of an area of cancer care research where Government funding is urgently needed is in the field of complementary therapies. Our own independent research demonstrates that cancer patients value such therapies, but a stronger evidence base is needed to advise health care practitioners on the most effective treatments. Greater regulation of practitioners is also required.

    (4) The Government should accord higher priority to assisting cancer care practitioners to bridge the gap between research and care by supporting the development of practical tools that facilitate the translation of research findings into improved care interventions for patients. Our own consultation with Macmillan nurses has revealed that they have difficulties in both accessing appropriate and relevant research and translating the findings into clinical practice. Our practice development research programme, for example the work we have done around breathlessness, helps to address this problem to a certain extent, but more could be achieved with increased Government funding and support.

  With reference to the National Cancer Research Institute, Macmillan Cancer Relief has recently applied for membership. We believe we can help scientific research into the causes, prevention and treatment of cancer to be improved by taking into account the perspective of both those who use cancer services and those who deliver their care. We also hope to encourage information between different research disciplines to be more effectively shared.

  With reference to cancer registrations, we believe that cancer registries have a vital role to play in achieving real and lasting improvements in the UK's cancer services. We fully understand the principles of patient consent and patient confidentiality, but believe that the application of these principles to the passage of patient data from doctors to cancer registries would be unworkable in practice and lead to the collapse of the system. We therefore welcome the establishment of the Patient Information Advisory Group and look forward to commenting on the draft regulations shortly to be produced by the Department of Health on cancer registrations.

Dame Gill Oliver

Director of Service Development

7 December 2001

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