Creation and Purpose

Responding to a perceived need within the cancer advocacy community and from NCI, NCI launched the Director's Consumer Liaison Group (DCLG) in 1997. At the time, it was the first and still is NCI's only all-consumer advisory body. To help determine the purpose of the DCLG, and the criteria and selection process for members, the newly formed Office of Liaison Activities (now the Office of Advocacy Relations) convened a DCLG Planning Group. The planning group was comprised of prominent cancer advocates and NCI staff. The planning group's work is documented in the report, "Creating the Director's Consumer Liaison Group." The NCI Director appointed the first members and the group held its first meeting in 1997.

In 1998, the DCLG became chartered as a federal advisory committee. The DCLG is chartered to advise and make recommendations to the Director of NCI from the perspective and viewpoint of cancer consumer advocates on a wide variety of issues, programs, and research priorities and to serve as a channel for consumer advocates to voice their views and concerns. The DCLG works with NCI to help it increase its involvement with the cancer advocacy community. Together they ensure that those who experience the burden of cancer also help to shape the course of NCI's efforts to eradicate this disease.

Highlights of Activities

  • Following the first DCLG meeting as a chartered committee in October 1998, the DCLG requested that NCI publish "Understanding Genetic Research and Population-Based Studies." It also advised and assisted NCI's Division of Extramural Activities with preparing training manuals for advocates who were participating in peer review, resulting in "The NCI Consumers' Guide to Peer Review" and "The NCI Consumers' Cancer Dictionary for Peer Review." The DCLG submitted an extraordinary opportunity in Cancer Communications for NCI's Bypass Budget, which was accepted for the 2002 and 2003 Bypass Budgets, and members were appointed to key internal NCI committees including the Bypass Budget Planning Group, Communications Opportunity Leadership Team, and Special Populations Working Group.
  • During 1999, the DCLG submitted a report on Selected Communications Programs to the NCI Director. Members continued their involvement in key NCI internal committees, such as the Clinical Trials Transition Team, and a member was appointed to the Central Institutional Review Board.
  • By 2000, several new DCLG members had been appointed. A key activity during this year was the DCLG's advice on the NCI Clinical Trials Primer. The primer serves as a "train the trainer" module for members of the community who inform people about cancer clinical trials. Several DCLG members attended training sessions on using the primer during 2000 through 2002. During 2000, the DCLG also provided advice to OLA as it established the Consumer Advocates in Research and Related Activities (CARRA) program. The CARRA program draws upon the experience of people affected by cancer to represent the views of cancer survivors and family members in NCI's daily activities. Most often CARRA members participate in the peer review process to help evaluate cancer research grants and review cancer education materials.
  • In 2001, the DCLG urged that an extraordinary opportunity in cancer survivorship be included in the Bypass Budget. Extraordinary opportunities for investment are scientific areas of cancer research in which focused efforts and increased resources can build on past successes to stimulate dramatic progress toward reducing the cancer burden. NCI accepted the extraordinary opportunity recommended by the DCLG for the 2004 Bypass Budget. Members continued their service on internal committees including appointment to the Cancer Outcome Measures Working Group. A JNCI monograph resulting from this effort was published 2003. In this same year the DCLG was represented on the ByPass Budget Planning Group.
  • During 2002, the DCLG prepared a report, in collaboration with the Patient Advisory Board of the Coalition of National Cooperative Groups, suggesting improvements in NCI's Clinical Trials system. This sparked a series of meetings and discussions with the staff of NCI's Cancer Therapy Evaluation Program. The DCLG also later assisted in the redesign of the clinical trials portion of the PDQ® on
  • When past NCI Director Andrew C. von Eschenbach first met with the DCLG in 2002, he asked them to help him determine the most appropriate direction for the DCLG. In response, the DCLG formed the Future of the DCLG Working Group. That working group, with NCI's assistance, surveyed the cancer advocacy community to determine its opinion on the most appropriate role for the DCLG. The survey findings, published in 2003, suggested a key role for the DCLG, which is to help the cancer advocacy community improve its collaboration with NCI. Ultimately, the NCI Director and the DCLG agreed the DCLG would focus on enhancing collaboration between the NCI and the advocacy community, health disparities and survivorship. Also during 2003, the DCLG participated in the President’s Cancer Panel series of meetings on cancer survivorship and the Trans-HHS Cancer Health Disparities Progress Review Group. The DCLG submitted comments on the 2005 Bypass Budget and assisted the Office of Liaison Activities with key initiatives related to the CARRA program.
  • During 2003 and 2004, NCI and the DCLG worked together to determine how to enhance collaboration between NCI and advocates. To that end, in 2003, the DCLG Working Group to Facilitate Dialogue was established to work towards creating a website, NCI Listens and Learns, as a mechanism to help facilitate a true dialogue between NCI and the cancer advocacy community (CAC). The website aims to increase the amount of high quality input received from advocacy organizations and the public on NCI's strategic plans, initiatives, or questions in various stages of development.
  • In 2004 the NCI Director reappointed 3 DCLG members and appointed 12 new members. The DCLG was represented through member involvement on the Planning Committee for the American Cancer Society/Office of Cancer Survivorship Conference and provided feedback to the Division of Cancer Control and Population Sciences on measuring the quality of cancer care.
  • The NCI Listens and Learns website was launched in early 2005 with full participation from 3 different DCLG Working Groups. As a result of full partnership there were over 70 advocacy organizations registered with the site on the day it was launched and many members of the public registered as individuals. A fourth Working Group began planning for a summit for advocates in 2006.
  • The DCLG hosted the first-ever summit for advocates at NCI in June 2006. The Listening and Learning Together: Bulding a Brudget of Trust summit meeting was sponsored and coordinated by OLA, in partnership with the advocacy community and the DCLG. The summit was successful in bringing in several new faces from the cancer advocacy community and educating all attendees about the many resources available at NCI for the cancer community. To view additional feedback about the summit view the summary and evaluation report.