BOX 6-5

Examples of Federal Advisory Committees on Consumer Issues

Two DHHS agencies have successfully used consumer advisory committees to obtain input from consumers. The NIH Director’s Council of Public Representatives (COPR) advises the NIH director on “matters related to medical research, NIH policies and programs, and public participation in agency activities.” The COPR has held workshops and issued reports on enhancing public input in research priority-setting, on strengthening public trust in the research enterprise, and on the organizational structure and management of NIH. The COPR Web site also provides information about the cost of running the council: $222,351 for operations and member expenses and $124,118 for 1.30 full-time equivalents of staff. NIH sponsors a public lecture series at which NIH scientists discuss their work in a manner appropriate for a lay audience (NIH, 2006); this series is another example of reaching out to understand consumer concerns.

The National Cancer Institute (NCI) Office of Liaison Activities launched the Director’s Consumer Liaison Group (DCLG) in 1997; it is NCI’s first and only consumer advisory group. 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 15 members include advocates, survivors, family members, and health care professionals and are chosen by the NCI director from a pool of applicants. The DCLG complies with the provisions of the Federal Advisory Committee Act. (NCI, 2006a,b). It also provides a forum for the cancer advocacy community. At the time of this writing, plans were being made for a summit titled “Listening and Learning Together: Building a Bridge of Trust” to bring together many segments of the cancer community to give them a voice in shaping the interaction and collaboration between NCI and consumers (NCI, 2006c). In 2003, NCI contracted with a consulting firm to conduct a survey of the cancer advocacy community and, among other things, to measure and track advocacy organizations’ perceptions of the DCLG. The survey found that DCLG was known in the cancer advocacy community, and 69% percent of respondents thought that the group would be more effective if it worked strategically with NCI rather than monitoring or participating in the implementation of NCI’s strategic plan. Respondents also wanted to see the DCLG more involved in research, clinical trials, survivorship, health disparities, and communication.

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