APPENDIX 12
Memorandum submitted by Marie Curie Cancer
Care
I have consulted with my colleagues, Dr Peter
O'Hare, Acting Director of Research at the Marie Curie Research
Institute, and Dr Susie Wilkinson, Head of Caring Services Research
on my reply.
Marie Curie Cancer Care provide specialist and
general palliative care to patients with cancer and other life-threatening
illness, throughout the United Kingdom. Our charity operates 10
specialist palliative care units (hospices), a nationwide home
palliative nursing service, and an Education service for health
care professionals. The Marie Curie Research Institute in Oxted,
Surrey, is responsible for a co-ordinated and peer reviewed programme
of cellular and molecular research. We also operate a burgeoning
Palliative Care Research & Development Unit within the Royal
Free and University College Medical School (Hampstead).
Clinical palliative care research is still at
an embryonic stage within the UK and we feel that the emerging
Cancer Research Networks are ideally placed to increase awareness
of the need for more structured research into palliative care,
and to encourage this as a focus for future research. I am aware
that a few Cancer Research Networks have palliative care clinicians
on their steering groups, but would welcome their inclusion being
formally recommended, in order that all aspects of the patient's
cancer journey may be identified as potential areas for research.
It would be marvellous if the Cancer Research
Networks could achieve a broadening of cancer research programmes
beyond the current objectives in therapeutic drug trials, to include
areas such as palliative care, psycho-social oncology, cancer
nursing and other important—but often neglected—areas
of research. As you might expect, Marie Curie Cancer Care would
advocate the development of a Palliative Care Research Network
and would welcome an increase in the funding available for palliative
care research.
In respect of developments vis-a"-vis the
Virtual National Cancer Research Institute and its relationship
with the Cancer Research Funders' Forum, we would like to comment
as follows:
The evolution of the NCRI from the previous
UK Cancer Research Funders Forum is now complete. Membership,
secretariat and operational issues have been dealt with in speedy
and efficient fashion, with the main aim of being an inclusive
organisation, whilst maintaining a streamlined and effective executive.
The NCRI key objectives have been established. The immediate major
aim is the definition of a Common Scientific Outline (CSO) for
all UK cancer research and the establishment of a Cancer Research
Database, which will yield a proper and accurate overview of the
current position. This is not just an information gathering exercise
the benefit of which will be difficult to establish. This is an
extremely worthwhile and important component of the initial NCRI
goals. It is also not a straightforward task. But it is clear
that the NCRI are establishing a very open dialogue with the main
cancer funders. They have sought and gained valuable insight into
the procedures and pitfalls from their NCI colleagues in the US,
and will be in a position to present the CRD early in the New
Year. It is not unlikely that this will need refining, but to
date they have achieved a great deal.
Long term goals include the establishment of
large scale resources, firstly in tumour banks, and later in major
areas such as bioinformatics, cancer genome anatomy, animal models
and so on. These are certainly ambitious and long-term objectives.
There are major hurdles to be overcome if it is to be done correctly
and be useful. But, if supported and ambitions are met, these
outcomes will be of very considerable benefit to the research
community and to cancer patients in the longer term.
NCRN Cancer Networks are also now firmly established,
with additional Networks, (such as one for Palliative Care Research,
which is of particular interest to Marie Curie Cancer Care) being
organised. Communication again appears to be very good, and the
NCRN and the NCRI will be in a position to be able to provide
initial assessment of the key measures they are trying to promote,
including for example a very tangible increase in the numbers
of patients being enrolled in clinical trials in some areas, by
mid to end 2002.
Clear progress has been made in the initial
phases of NCRI and NCRN. We await the coming year with expectation
and enthusiasm for sustained advances towards meeting well established
aims.
Dr Teresa Tate
Medical Adviser
5 December 2001
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