Select Committee on Health Written Evidence

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.


  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


A.   NCR/ Clinical Studies Groups—Progress Review Panel Report Consumer Liaison Group—NCRN—March 2006.

B.   Evaluation of Consumer Research Panels in Cancer Research Networks—Final Report Executive Summary—November 2006—Worthing and Southlands Hospital NHS Trust and Kings College London.

C.   NCR/ Strategic Plan 2005-08—September 2005—National Cancer Research Institute.

D.   Consumer Liaison CSG 2005-06 Annual Report—September 2006—National Cancer Research Network (chapter of NCRN Annual Report).

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