NCI Selects Five Nominees for Director's Consumer Liaison Group

National Cancer Institute
Thursday, 7 September 2000

The National Cancer Institute (NCI) has indicated its intent to appoint five new members to the NCI Director's Consumer Liaison Group (DCLG). The DCLG is a forum for exchange of information and perspective between the cancer advocacy and scientific communities.

The new members are: Barbara LeStage, Wrentham, Mass.; Pamela McAllister, Fitchburg, Wis.; Nyrvah Richard, New York, N.Y.; Henry Porterfield, Hinsdale, Ill.; and Paula Simper, Rancho Palos Verdes, Calif.

All DCLG members serve three-year terms.

The DCLG makes recommendations to the director of NCI from the consumer advocate perspective on a wide variety of issues, programs, and research priorities. The DCLG, comprised of consumers who are involved in cancer advocacy, reflects the diversity of those whose lives are touched by cancer. NCI brings together these advocates for regular meetings that create a two-way forum for direct interactions with the scientific community at NCI.

As a chartered federal advisory committee, the 15-member DCLG works with NCI to help the Institute increase its involvement with the cancer advocacy community. Together they ensure that those who experience the burden of cancer help to shape the course of NCI's efforts to eradicate the disease. The DCLG has been a model for incorporating consumer opinions and concerns into the planning and review of programs at the National Institutes of Health (NIH).

The threefold purpose of the Group, which meets several times a year, is to:

- Help develop and establish processes, mechanisms, and criteria for identifying appropriate consumer advocates to serve on a variety of program and policy advisory committees responsible for advancing the NCI mission.

- Serve as a primary forum to discuss issues and concerns and exchange viewpoints that are important to the broad development of NCI program and research priorities.

- Establish and maintain strong collaborations between NCI and the cancer advocacy community to reach common goals.

During its first two years, the DCLG has provided a rich source of ideas and viewpoints. The Group assisted in developing a primer, "Understanding Genetic Research and Population-Based Studies," focusing attention on the issues that concern individuals who participate in this research. The booklet was distributed to members of the NCI advisory boards and the cancer advocacy community. In addition, the DCLG reviewed revisions of informed consent documents for participants in clinical trials, and provided ideas for their dissemination. The group also is working with the NCI to develop a formal process for involving advocates in Institute programs.

Most of the newly appointed DCLG members are cancer survivors, but family members of cancer patients and health professionals involved in cancer advocacy are represented, as well. The cancer experience of the new members includes prostate, breast, colorectal, and pancreatic cancers.

More information about the DCLG, including a membership roster, meeting agendas and meeting summaries, can be found online at http://www.cancer.gov by selecting "Advisory Boards and Groups".

For more information, or to contact National Cancer Institute, see their website at: www.cancer.gov