62. Evidence submitted by the National
Cancer Research Institute (PPI 32)
I enclose a memorandum of evidence for the forthcoming
Health Select Committee Inquiry into Patient and Public Involvement
in the NHS.
The submission is from the Consumer Liaison
Group (CLG) of the NCRI. The CLG is the national patient/public
involvement group within cancer research, drawing its members
from all across the UK. Our members also have extensive experience
of lay involvement in service development, guideline development
with NICE, and in other areas of advocacy in the NHS and healthcare,
as well as their involvement in cancer research.
The CLG now additionally works. within the PPI
structures of the UK Clinical Research Collaboration and UK Clinical
Research Network. As the longest established patient and public
involvement group within UK clinical research it also has strong
links with similar groups in the USA and is encouraging the development
of a similar approach in Europe through ECPC, the European Cancer
Patient Coalition.
EXECUTIVE SUMMARY
1. The National Cancer Research Institute
Consumer Liaison Group (CLG) was formed in 2000 and operates as
a partner within the NCRI structure, its members taking part as
equals at all levels and in all areas of cancer research.
2. The CLG has been evaluated by an independent
review panel of international experts and the CLG, NCRI and NCRN
(National Cancer Research Network) have been congratulated on
its achievements. A development project to create panels in the
cancer research networks has also been evaluated.
3. The core theme of the relationship between
consumers in cancer research, researchers and clinical professionals,
is partnership. We believe that this approach is returning benefits
and can be emulated in other areas of healthcare.
1. What is the purpose of patient and public
involvement?
1.1 Patient and public involvement in research
has a clear set of objectives:
to make research more relevant
to the needs of patients;
to help deliver research results
faster through better designed studies which accrue patients more
quickly; and
to provide evidence which enables
health services to deliver benefits to patients more effectively.
2. What form of patient and public involvement
is desirable, practical and offers good value for money?
2.1 The Consumer Liaison Group (CLG) of
the National Cancer Research Institute (NCRI) was established
in the late 1990s under a prior research structure. It was brought
into the NCRI and the National Cancer Research Network (NCRN)
following the Cancer Plan in 2000 and its members have successfully
worked in partnership with professional researchers since then.
2.2 The CLG is made up of approximately
60 patients, carers and others affected by cancer who work with
the NCRI, NCRN, and with individual NCRI partners on:
peer review of research proposals
(principally through the 23 NCRI Clinical Studies Groups);
strategic oversight, development,
and priority setting (with NCRI Board, NCRI Strategic Planning
Groups and the NCRN Operational Steering Group);
award of funding for new research
infrastructure, clinical trials and other research studies (through
Department of Health, Cancer Research UK, MRC and other funders);
periodic review of organizations
and initiatives in cancer research (with Department of Health
and NCRI partners); and
development of new research
initiatives by the NCRI (eg National Prevention Research Initiative,
OnCore UK).
2.3 Members of the CLG also work closely
with researchers on new clinical studies. Increasingly the questions
which these studies are seeking to answer are influenced by patient/consumer
input. Patient information is now being written jointly by researchers
and patient representatives in many instances.
2.4 The over-riding theme is one of partnership.
To achieve that aim managers and researchers have successfully
accepted the challenge of working with patients and carers. In
their turn patients and carers have undertaken training and accepted
responsibilities which reflect the new access which the NCRI/NCRN
structures have opened up.
2.5 The success of this partnership was
recorded in March 2006 by an international review panel. It commented:
"The CLG was congratulated on the numerous
achievements in such a short space of time. The Group had done
a difficult job in a changing environment. The Group was not only
working collaboratively and moving forward but also working in
a complementary way with the research community."
"It was noted that the Group had moved from
developing expertise and was now beginning to develop strategy."
2.6 The CLG is now evolving to fulfill the
demands being made on it by the changing structure of cancer research
following recent developments. The evaluation of a pilot project
to create three network patient/consumer research panels has given
some clear guidance on how effective involvement can be developed
in the local research networks. The creation of a new network
of Experimental Cancer Medicine Centres (through joint funding
from Department of Health, the devolved administrations and Cancer
Research UK) has created the need to develop similar partnerships
in the experimental/translational research community, with some
new challenges to be addressed.
2.7 The NCRI CLG represents a model of good
practice for patient and public involvement in research which
has been recognized by Department of Health. It is a stable base
for patient/public involvement in cancer research but it is not
standing still. Its past and present success is providing a foundation
for further success as the desire for effective involvement is
recognized by the whole cancer research community.
2.8 The CLG is now providing a base model
for patient and public involvement in the new clinical research
structure through UKCRN, UKCRC, NIHR and MRC.
3. How should LINks be designed?
3.1 We believe that the lessons of the CLG's
success are:
The context of partnership subscribed
to by all parties.
The stability of the single
national group.
The strength of the commitment
made by individuals, both professional and patient.
The professional support for
the CLG as it develops an agenda reflecting patient priorities.
3.2 The independent evaluation of the pilot
project to create Network Consumer Research Panels demonstrates
that an exclusively patient/public group with a wide remit has
problems developing momentum, even when facilitated by a professional
secretariat. The lesson for these panels (which were not supported
by a compulsory requirement for involvement) was not that compulsion
was necessary but that effective partnership building strategies
generated demand from professionals and researchers for involvement
from patients. This created benefits all round. We believe that
compulsion at the outset rather than adopting a partnering approach,
presents a risk for a patient/consumer group, potentially encouraging
confrontation which, even at only a low level, could be disruptive.
3.3 Patients and the public have a vested
interest in seeing health services improve and managers have a
professional interest in that improvement. By identifying common
agendas and expressing purpose through consensus decisions arrived
at through open discussion between equals, on those occasions
when common purpose is not evident at the outset, we believe the
NCRI Consumer Liaison Group demonstrates that partnership works
in research. We believe it can work elsewhere.
Roger Wilson
Chair, NCRI Consumer Liaison Group
5 January 2007
REFERENCES
A. NCR/ Clinical Studies GroupsProgress
Review Panel Report Consumer Liaison GroupNCRNMarch
2006.
B. Evaluation of Consumer Research Panels
in Cancer Research NetworksFinal Report Executive SummaryNovember
2006Worthing and Southlands Hospital NHS Trust and Kings
College London.
C. NCR/ Strategic Plan 2005-08September
2005National Cancer Research Institute.
D. Consumer Liaison CSG 2005-06 Annual ReportSeptember
2006National Cancer Research Network (chapter of NCRN Annual
Report).
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