Patient Involvement in Cancer
118. The central objective of most cancer research
is to improve outcomes for cancer patients, be that in the short
or long term. Several witnesses suggested that patients themselves
should therefore be more closely involved in setting the research
agenda. Cancerlink, for instance, said that "cancer patients
and their carers should be involved in decisions about research
at every levelfrom deciding on research priorities to application
CancerBACUP argues that "research is primarily driven by
scientists and oncologists, and does not always reflect the priorities
of patients. Patients are interested not only in cures for cancer
but also in cancer prevention, especially for future generations,
and in quality of life issues".
Mr Fred Walker, a cancer patient and secretary of the Castleford
and District Self Help Group, agreed that patients and their carers
should be involved with research decisions, stating that this
involvement should be more than "a tokenistic gesture".
That such a large proportion of the funds for research are raised
by patients and their carers through the research charities makes
the case for their involvement in setting research priorities
even stronger. The ICRF told us that it has to be accountable
to its donors, who are kept fully up to date with directions and
progress and that, together with the CRC, it is seeking ways of
improving accountability to donors.
119. Scientific judgements on the timeliness, feasibility
and promise of various research approaches are matters properly
left to experts. We have been persuaded, however, that decisions
over long-term strategies for tackling cancer can and should involve
patients, carers and their representatives. In some instances
this already happens. Some research committees have patients representatives.
Indeed, one of our witnesses, Gillian Speed, a cancer patient
from Sheffield, is a patient representative on the North Trent
Cancer Network Culyer Funding Team.
Research Ethics Committees also have lay members. Patients should
also be consulted in the design and delivery of clinical trials.
Moreover, as Cancerlink told us, patient involvement of this kind
requires investment in training and support to build the capacity
of patients and their representatives to take part in the research
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.
142 See Annex 4.