In February 1993 the scope of the work to be undertaken by the CRDC
Advisory Group on Cancer was set, with a primary focus on NHS R&D
needs which would complement existing cancer research and avoid
unnecessary duplication. Early planning ensured that adequate time was
available for consultation and information gathering, and for effective
co-ordination of work on setting priorities within the NHS R&D
Programme. A preliminary meeting was also held to seek the advice of Dr C
Paine and Professor J Chamberlain, both of whom subsequently became
members of the Advisory Group. Dr Paine is the President of the Royal
College of Radiologists and had recently completed the review of cancer
services for the London Implementation Group.
The formal aspects of the work, including written consultations and the
planning of workshops, were started before the Advisory Group met for the
first time in November 1993. The aim was to create an early momentum for
the review. As part of this process the first workshop, on the
organisation of cancer services, was held in October 1993. This workshop
was organised by Professor Stephen Frankel who - as Regional R&D
Director for what was then South Western RHA - had accepted responsibility
for taking forward the commissioned programme for the NHS. The workshop
report was made available to the Advisory Group members before their first
A wide-ranging written consultation was undertaken with the NHS and
relevant external organisations. (A full list of those consulted is at Annex
5.) The letter of invitation
asked respondents to identify the most important problems of the NHS in
all fields of cancer that could usefully be addressed by R&D (see Annex
6). Recipients and members
of the Advisory Group were also asked to suggest additional organisations
who might provide useful input. The final total of organisations and
individuals consulted was over 150 and more than 90 detailed responses
were received. The early start made it possible to make the majority of
responses to consultation available to the first meeting of the Advisory
Information was collected from the following sources:
Woodman provided a draft paper on "The Interpretation of
Regional Differences in the Survival of Patients with Cancer"
which considered possible reasons for differences in survival rates
between the North Western Regional Health Authority and a number of
countries, including Scotland.
Health Monitoring Unit (CHMU), Department of Health, provided an
Overview of Cancer Statistics, including 82 graphs.
Research Council provided their recent reports on cancer research.
- Ad Hoc Group on
Screening Research, 1992;
- Workshop on Behavioural
Sciences and the Genetic Approach to Human Health, 1993;
- Working Party on
Quality of Life, 1989;
Cancer Research Fund provided copies of its 1992 Scientific Report.
Research Campaign provided its strategic planning documents of the
Scientific Committee, and the Education and Psychosocial Research
Office NHS Directorate: Welsh Health Planning Forum provided copies
of its Protocol for Investment in Health Gain on Cancers.
publications were received from those consulted. A number of other
papers were also considered and are referenced later in the report.
THE ADVISORY GROUP
The composition of the Advisory Group reflected a wide range of NHS
interests and disciplines. Individuals were selected for their experience
and expertise and not as representatives of particular groups or
organisations. Invitations were extended in July 1993 and the group met
for the first time the following November.
Advisory Group Members were asked to accept only if they could attend all
the planned one day meetings of the Group. To enhance continuity with the
commissioned programme resulting from this review, Professor Frankel was
invited to attend as an observer. Observers were also invited from
Government Health Departments and the Medical Research Council.
At its first meeting Members agreed the arrangements that had been made
for workshops, adding a fifth workshop to cover psychosocial and quality
of life issues. Members also agreed that it was not necessary to extend
the membership of the Group although they did suggest that it would be
helpful to form sub-groups to discuss particular areas of research need in
greater depth, and agreed that these groups should co-opt further experts
Individual members also undertook specific responsibilities: Professors
Chamberlain and Woodman agreed to consider information on burdens of
disease that was currently available, and Professor Bosanquet agreed to
prepare a paper on costs of disease for the next meeting.
Members were asked to declare their areas of particular interest
(hobby-horses) so that any potential biases in setting priorities were
clear from the outset.
Workshops were organised in five regions. The aim was to seek input from a
wide community across the country, to obtain a sense of ownership of the
final priorities and to share the workload. The first of the workshops was
held in October 1993, and the others were held after the first meeting of
the Advisory Group and before the sub-group meetings in January 1994.
Each workshop was organised by a Regional Director of R&D and was open
to Advisory Group members and to people known to be interested in that
particular topic from the region and elsewhere. Approximately 230 people
attended the workshops. Each workshop was run along slightly different
lines but all were asked to produce a set of priorities. The workshops
||The Organisation of
Cancer Services, South Western RHA
- primary, secondary, tertiary care
- local, regional, national facilities
- purchaser/provider interface
Prevention, North Western RHA
and Research, East Anglian RHA
- basic cancer research
- diagnostic imaging
- diagnostic pathology
in Cancer, Yorkshire RHA
- clinical trials
and Quality of Life Issues, West Midlands RHA
- palliative care
- quality of life
Written reports on each workshop
were provided by the organising Regional Directors of R&D and were
distributed to Advisory Group members.
Following each workshop, the research needs identified were discussed by
the relevant sub-group of the Advisory Group. The topics covered by the
subgroups related closely to those addressed by each workshop, with a
sixth subgroup covering palliative care. The subgroups were:
including new technology
||Screening and early
Each sub-group was chaired by a
member of the Advisory Group with an appropriate disciplinary background.
Other Advisory Group members joined sub-groups appropriate to their
specific interests and outside experts were co-opted as required - 33
additional experts in all. The memberships of the Sub-groups are given at Annex
2. Each sub-group received a
digest of the responses to the consultation exercise which referred to its
particular subject area.
The sub-groups proved to be a useful way of refining the numerous
proposals for R&D that were submitted through consultation and through
the workshops. They met from January to March, 1994 - each meeting up to
three times - and worked to a common set of criteria (see Annex
7). Each sub-group presented
a report to the main Advisory Group listing specific priority areas
together with a covering commentary which explained the reasons for their
choice. As far as possible the relative costs and burdens for each
priority item for the NHS were considered but knowledge in these areas was
often limited because of gaps in existing information.
SELECTING AND FINALISING THE LIST OF PRIORITY AREAS
The Advisory Group met for a second time in March 1994 to consider the 77
priority areas identified by the sub-groups. Further evidence from the
consultation exercise was also considered, including input from patient
and carer groups. The Advisory Group also considered the recommendations
of the Chief Medical Officer's Expert Advisory Group on Cancer Services.
Having deleted duplications and consolidated areas in which there were
overlaps, the Advisory Group was left with 43 priority areas to score.
Members voted using a keypad linked to a computer system, following the
guidance on scoring that is given in Annex
7. Anonymised scores were
immediately displayed on a screen as a histogram. The sum score for each
item was also displayed. After the meeting individual keypad scores and
the means, medians and modes of the scores for each item were calculated
and distributed to members for consideration before the Advisory Group met
In scoring the priority areas, the Advisory Group used the same criteria
as the subgroups. Members also took heed of the important areas of cancer
research (e.g. in basic science and drug development) that are currently
funded by other research funding agencies and by industry.
At a third and final meeting in April, 1994, Advisory Group members
considered the recommendations of the CRDC Standing Group on Health
Technology that related to cancer, together with other recently received
Against this background, the scores for all priority areas were reviewed.
Printouts of the histogram scores were shown and particular attention was
paid to areas with a bi-polar distribution of scores. This gave members an
opportunity to change their individual scoring and reconsider the final
Twenty-five top scoring priority areas were identified. These were
examined for their distribution across the subject areas represented by
the six sub-groups and for any relation to health economics.
The breakdown of priority areas selected is as follows:
including new technology
Distribution of the items across
priority ranking was also considered. Within the top 5 scores the subject
areas represented were palliative care, psychosocial aspects, treatment,
aetiology and prevention, and screening, indicating that a balanced
distribution had been obtained (Annex
Advisory Group members felt that the overall ranking and the distributions
of the priority areas adequately represented the views of the Group.
ADDED VALUE OF THE REVIEW
At the first meeting 34 hobby horses had been identified by the members of
the Advisory Group. 11 of the hobby-horses can be recognised in some guise
among the top priorities, and are included among those ranked in the
first, second, third and equal fifth positions. But the 25 priorities
identified also include 14 which were not hobby-horses. This strongly
demonstrates the added value gained from consultation, workshops and
evolving discussion and consideration of the evidence.
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