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February 6, 2007 • Volume 4 / Number 6 E-Mail This Document  |  Download PDF  |  Bulletin Archive/Search  |  Subscribe


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Director's Update

DCLG's Status Enhanced Under Director's Office Restructuring

One of the most important changes being instituted as part of the restructuring of the NCI Office of the Director is the new direction of the Director's Consumer Liaison Group (DCLG).

DCLG is supported through the Office of Liaison Activities (to be renamed the Office of Advocacy Relations under the reorganization), which will report directly to the NCI director. As a result of that direct reporting relationship, DCLG will now be on par with the institute's other major advisory committees, the National Cancer Advisory Board, the Board of Scientific Advisors, the Board of Scientific Counselors and the Clinical Trials Advisory Committee (CTAC).

Since its inception in 1997 as the first and only all-consumer NCI advisory committee (it was officially chartered as a federal advisory committee the next year), DCLG has provided invaluable guidance and feedback on a broad array of issues to NCI senior leadership.

Indeed, DCLG has been a vital representative of the entire cancer advocacy community at NCI, including, among other things, assisting in the development of training manuals for advocates participating in the peer-review process, helping elevate survivorship research as a priority in the Bypass Budget, aiding in the formulation and pilot testing of the "NCI Listens and Learns" Web site, and convening the highly successful NCI advocacy summit last summer.

DCLG will continue to provide guidance and feedback on all topics of concern to the advocacy community. However, as part of this change, I am requesting that DCLG pay particular attention to three critical issues that will benefit immensely from a greater consumer perspective: 1) minority recruitment and patient outreach, 2) cancer care delivery, and 3) eliminating cancer health disparities.

In the area of minority recruitment and patient outreach, DCLG will play a critical role in helping NCI improve recruitment to clinical trials, particularly among minority groups, who continue to be underrepresented in these important investigations. DCLG has already taken an important step down this path, with the participation of DCLG member Col. (Ret.) Jim Williams on the newly created CTAC.

For cancer care delivery, DCLG members will be asked to participate in the pilot of the NCI Community Cancer Centers Program (NCCCP), including serving on the advisory committee developed to advise and direct the program and providing ongoing feedback to the director about the community realities of this pilot program. As an important first step, DCLG member Dr. Beverly Laird already is a member of the NCCCP advisory committee.

Finally, on the disparities front, it is imperative that we get consumer advocates' perspectives on the programs and policy approaches NCI has developed to better understand and address this issue. This will include participation on the newly established Integration and Implementation, or I2, team on health disparities.

DCLG members' expertise and experience has been and will continue to be crucial to shaping NCI's science and research agenda. For example, when President Bush visited NIH on January 17, DCLG member Dr. Grace Butler was one of the roundtable participants who told her personal story of cancer. Giving DCLG more direct access to the NCI Director's Office and asking members to offer more focused attention on these three high-priority areas will greatly enhance cancer advocates' role in the NCI decision making process and ensure that NCI is as responsive to advocates' needs as possible.

The role of advocates in maintaining and accelerating our scientific progress has never been greater or more necessary. I would like to thank Mr. Doug Ulman, a three-time cancer survivor, for his leadership of DCLG, and to all the members for their tireless efforts and dedication to advancing the science of cancer care.

Dr. John E. Niederhuber
Director, National Cancer Institute

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