NCI directors consumer liaison group

Although representatives of advocacy groups had participated in a variety of NCI committees for many years, the pool of representatives was relatively small. In 1996 the NCI recognized a need to incorporate the views of the cancer community in a more structured way and embarked upon creating a new entity comprised entirely of consumers. This goal was achieved in August 1998 when the first Directors Consumer Liaison Group (DCLG) was selected, with a remit to provide input to the planning of programmes and future directions of research of the NCI. Setting up the initial DCLG involved careful planning by a group of NCI staff undertaken in collaboration with key cancer advocacy groups. Following response to an NCI call for nominations, fifteen members were selected by the NCI director. Nominees had to meet a series of eligibility requirements (summarised in Box 2.3) and were subject to an objective and pre-defined screening and evaluation process. The planning group recommended that the DCLG should reflect the breadth and depth of the cancer advocacy community and should therefore be multi-culturally diverse and include representation from a range of organizations and a broad mix of cancer sites. The initial membership, which was selected from 136 nominations, comprised mostly cancer survivors, but family members and health professionals involved in cancer advocacy were also included. Collective cancer experience included cancers of the bladder, brain, breast, cervix, kidney, lung, ovary, and prostate and in Hodgkin's disease, leukaemia, multiple myeloma, and sarcoma.

Members of the DCLG serve overlapping terms of three years, and meet at least twice per year. Subgroups charged with specific tasks meet more frequently. Members are responsible for liaising with their constituencies and for seeking and reflecting input from them. The work of the group is supported by the NCI Office of Liaison Activities with the director of this office serving as the DCLG Executive Secretary. Recommendations of the DCLG go directly to the Advisory Committee to the Director of the NCI. Other national and international organizations have established or are establishing similar advisory groups. Following many years of having lay representation on its governing body, in 2000, the British Medical Research Council set up a Consumer Liaison Group to advise Council on ways of promoting effective and appropriate consumer involvement in its activities. The UK National Cancer Research Institute, which was established in 2001 set up its Consumer Liaison Group in parallel with its Clinical Studies Groups as one of its initial priorities.

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