. "4 Evaluation of Priority Setting and Programs of Research on Ethnic Minority and Medically Underserved Populations at the National Institutes of Health." The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. Washington, DC: The National Academies Press, 1999.
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what we need is more visibility of NCI people," she stated, "because in Atlanta, for instance, you mention NCI, nobody knows the National Cancer Institute [in] our community. They're up there in an ivory tower maybe, but they really don't know what the National Cancer Institute does. They hear [of] the American Cancer Society because of all the [information about] Relay for Life, and all this has been in the news. But NCI needs to be a little more visible in the communities, I think, for one thing."
Zora Kramer Brown added that health providers in minority communities are often overburdened. She also stated that NIH needs to be sensitive to the special circumstances and outreach needs faced by health providers and health educators in these communities.
Barbara Clinton stated that issues of understanding and addressing a diagnosis of cancer for many ethnic minority and medically underserved individuals are complex and require the patient to negotiate culturally and institutionally imposed barriers to the retrieval of information. Information should therefore be tailored to these needs, she indicated.
7. Greater sensitivity to culturally appropriate outreach efforts is needed.
Venus Gines noted that cancer prevention and control messages must be tailored to ethnic minority communities, a task that is often more complicated than it appears. "We should try to stay away from just straight translating from English to Spanish. We need to really focus on the culture, and I think that's very important."
Both Venus Gines and Lucy Young also noted the need for cancer prevention and outreach messages to address potential cancer stigma and "taboo" issues among minority communities. In the absence of having cancer survivors from these communities as visible role models, they stated, many ethnic minorities with cancer may not want to be publicly identified. Young added that many Chinese Americans living with cancer may not want others in the community to know of their condition.
8. Follow-up services should be made available for individuals after cancer screening.
The need to provide follow-up services, especially for ethnic minority patients for whom late diagnosis is a problem, is very important. Venus Gines described her frustration in trying to find appropriate follow-up services for women screened at the Atlanta community health fair with abnormal Pap smear results.
9. A strategic plan to address the survivorship needs of ethnic minority communities should be developed.
Lucy Young recommended that NCI form a diversity team to develop ongoing task force committees to develop strategic plans for different ethnic