APPENDIX 21
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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