New Chair Appointed to Director's Consumer Liaison GroupFor Immediate Release
Friday, December 21, 2001
NCI announces the recent appointment of Ms. Barbara LeStage, as chair to the NCI Director's Consumer Liaison Group (DCLG). The DCLG, a chartered advisory committee comprised of fifteen consumer advocates, actively advises and makes recommendations to the NCI Director on issues that are relevant to people with cancer, their families, and the cancer advocacy community. Members are selected for a 3-year term to:
- Serve as a primary forum for discussing issues and exchanging viewpoints important to the development of NCI programs and research priorities
- Help identify appropriate consumer advocates to serve on NCI program and policy committees
- Establish and maintain strong collaborations between NCI and the cancer advocacy community
During its first two years, the DCLG 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. This year the DCLG was instrumental in development of the Consumer Advocates in Research and Related Activities (CARRA) program, which explicitly set a structure and criteria for inclusion of advocates at NCI. The DCLG provided advice about the criteria and evaluation for new members, the approach to balancing the membership to ensure diversity, and the development of an orientation program for NCI staff and CARRA members.
To accomplish its goals, the DCLG has established four working groups, which assist in identifying ways advocates can be involved in high priority areas and activities at NCI. These are the Advocacy Involvement Working Group, the Clinical Trials Promotion Working Group, the Quality of Care/Health Disparities Working Group, and the Cancer Survivorship Working Group. These groups will serve as conduits between cancer patients and their families to bring their viewpoint to discussions with the Director, NCI.
Ms. LeStage is a six-year breast cancer survivor from Wrentham, MA. She was fifteen when her mother died of pancreatic cancer. In 1975, LeStage volunteered for the American Cancer Society (ACS) and began her lifelong service in this area. She has extensive advocacy background in health care and consumer issues. She has served on a Department of Defense Breast Cancer Research Panel, worked as a member of the Institutional Research Grant Review Committee at Massachusetts General Hospital, and is serving as a member of the Harvard Center for Cancer Prevention Advisory Board and the Joint Commission on Accreditation of Healthcare Organizations' Public Advisory Group on Health Care Quality. LeStage began her ACS activities in Massachusetts and served as chair of the board in 1991-1993. She became involved in ACS national committees in the 1980s and has chaired several national ACS committees. In November 1999, she received the ACS National Volunteer Leadership award. One of her accomplishments is persuading the ACS to include survivors on its National Research Council and all National Research Panels.
More information about the DCLG, including a membership roster, meeting agendas and meeting summaries, can be found at the NCI website under the category "Advisory Boards and Groups."