TOWN HALL MEETING

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The DCLG urges advocates to participate by learning about the services available to them through NCI’s Office of Liaison Activities (OLA).  OLA supports NCI’s research and related programs by fostering strong communications and relationships with the cancer advocacy community and professional societies.  In fact, OLA coordinated the Listening and Learning Together Summit with the DCLG’s guidance.

We encourage you to visit OLA’s Web site at http://ola.cancer.gov where you can find multiple opportunities to get involved:  attend public meetings, provide comment on government policies, and listen in on toll-free teleconferences.  The information is in the public domain and may be reprinted or reproduced in your organization’s Web site or newsletter.

One way to become involved is to join the listserv to receive the NCI Nealon Digest. This biweekly electronic newsletter highlights the federal government’s efforts to reduce the burden of cancer. By signing up for this listserv you will also receive occasional messages about other opportunities to learn more about NCI’s research mission.  This information is also in the public domain and may be reprinted or reproduced in your organization’s Web site or newsletter.

Another way NCI involves advocates is through OLA’s Consumer Advocates in Research and Related Activities (CARRA) program.  CARRA was created in September 2001 to provide a formal mechanism for consumer advocates who represent the patient viewpoint to participate in various NCI activities, such as peer review of grants on an as-needed basis.  Current CARRA members have a 3-year term that will end in September 2007. The call for new applicants is advertised in the NCI Nealon Digest, mentioned above. Please visit http://carra.cancer.gov for more details.  The http://carra.cancer.gov/members/training/resources Web site has links to much useful information for all advocates (not just CARRA members).  You may also find a presentation on NCI’s organization, mission, and budget to be of interest, available at http://carra.cancer.gov/images/content/Pre-Workshop-Teleconference.pdf.

OLA also administers the NCI DCLG.  Launched in 1997, the DCLG—a federally chartered committee—was the first all-consumer advisory board at NIH.  The DCLG’s 16 members advise the NCI Director about a wide variety of issues, programs, and research priorities from the perspective of people whose lives are affected by cancer. OLA has created a DCLG Web page at http://dclg.cancer.gov that provides information on the group’s charter, membership biographies, and member activities.  Every year members rotate off of the DCLG and new members are selected by the NCI Director. Nominations for new members are sought early in each year, with applications due in March; further information on nominations will be posted in the NCI Nealon Digest.

We also encourage you to investigate a pilot online forum for dialogue with the advocacy community and the general public.  NCI launched this Web site forum, NCI Listens and Learns, in which advocates and interested members of the public participate in an open dialogue with NCI on a range of cancer research topics. NCI posts discussion topics related to its programs and priorities, and both advocacy groups and members of the public are encouraged to provide feedback and help shape the direction of its future activities.  The NCI Listens and Learns Web site can be viewed at http://ncilistens.cancer.gov/.

NCI also has a number of formal advisory boards, with public members on the National Cancer Advisory Board (NCAB), the Board of Scientific Advisors, the Board of Scientific Counselors, and the President’s Cancer Panel.  To learn more about all of these groups, visit http://deainfo.nci.nih.gov/advisory/boards.htm.

NCI is committed to communicating with the public and the research and medical communities about its mission, programs, and scientific progress.  NCI works closely with the media, advocacy groups, and professional societies to disseminate this information.  News releases and information on cancer can be found on the NCI Web site at http://cancer.gov. In addition, the site has information on clinical trials, statistics, research programs, and research funding, and you may subscribe free of charge to the NCI Cancer Bulletin, a biweekly electronic newsletter, to keep you abreast of NCI research news.  Again, this information is in the public domain and may be reprinted or reproduced in your organization’s Web site or newsletter.

The DCLG fully intends to recommend to the NCI Director that a future Summit should be scheduled for advocates.

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