Report to the NHS Central Research & Development Committee
Method of Working










EARLY PLANNING

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 meeting.


CONSULTATION

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 Group.


INFORMATION

Information was collected from the following sources:

  Professor 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.
   
  The Central Health Monitoring Unit (CHMU), Department of Health, provided an Overview of Cancer Statistics, including 82 graphs.
   
  The Medical Research Council provided their recent reports on cancer research. These included:-
  • 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;
   
  The Imperial Cancer Research Fund provided copies of its 1992 Scientific Report.
   
  The Cancer Research Campaign provided its strategic planning documents of the Scientific Committee, and the Education and Psychosocial Research Committee.
   
  The Welsh Office NHS Directorate: Welsh Health Planning Forum provided copies of its Protocol for Investment in Health Gain on Cancers.
   
  Many relevant 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 as required.

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

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 covered:

  The Organisation of Cancer Services, South Western RHA
- primary, secondary, tertiary care
- local, regional, national facilities
- purchaser/provider interface
  Cancer Prevention, North Western RHA
- aetiology/epidemiology
- education
- behaviour
- genetics
  Diagnosis and Research, East Anglian RHA
- basic cancer research
- diagnostic imaging
- diagnostic pathology
- epidemiology/screening
  Treatments in Cancer, Yorkshire RHA
- clinical trials
- surgery
- radiotherapy
-chemotherapy
  Psychosocial and Quality of Life Issues, West Midlands RHA
- psychiatry
- psychology
- 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.


SUBGROUPS

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:

  Aetiology and prevention
  Diagnosis, including new technology
  Palliative care
  Psycho-social aspects
  Screening and early referral
  Treatment, including follow-up

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 again.

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 evidence.

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 ranking order.

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:

  Treatment, including follow-up 6
  Psychosocial aspects 6
  Diagnosis, including new technology 4
  Palliative care 3
  Screening 3
  Aetiology and Prevention 2
  Health economics 1

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 8).

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.


Next Page (Recommendations)
CRDC Report: Contents Page

 
  Crown copyright, Department of Health. All rights reserved.
Last updated 22 November 2004
Page maintained by Helen Bailey
This page looks best when viewed with either MS Internet Explorer or Netscape Navigator.