Dissemination of Information to Cancer Survivors

As noted in Chapter 3, NCI has established a number of offices, programs, and mechanisms for outreach to cancer survivors and consumers, including several programs and services tailored to the needs of ethnic minority and medically underserved communities. These will not be described in detail here (see Chapter 3 for a full description of these programs). NCI's Cancer Information Service (CIS), however, deserves greater attention, given its prominence as a primary source of information for many cancer survivors.

CIS is a successful avenue for cancer information dissemination. According to NCI, the service received 500,000 calls in 1996. In one survey, in which 80 percent of the respondents were patients, users tended to be generally very satisfied with communication from their treating physicians, had strong information needs, and preferred to participate in their treatment plans (Manfredi et al., 1993). However, no data on the ethnic minority status of the users were provided.

CIS provided information on calls to its toll-free telephone service. These data are summarized in Tables 5-1 and 5-2 in Chapter 5. It should be noted that the committee did not formally analyze these data statistically (i.e., it did not compare the observed patterns of calls with the expected frequencies on the basis of an analysis of cancer incidence among the U.S. population). However, Table 5-1 indicates that approximately 15 percent of calls to the CIS telephone service were from ethnic minorities. Because ethnic minorities make up about 28 percent of the U.S. population, however, it appears that ethnic minorities are proportionately less likely to use CIS services than whites. Given the disproportionate incidence of cancer among some ethnic minority populations, one would hope for appropriately increased numbers of calls from affected groups.

Published Research Related to Survivorship

NIH provided a list of more than 850 scientific journal publications related to cancer among minority and medically underserved populations that have resulted from awards or programs of NIH since 1985. The committee analyzed only the titles of the articles listed to determine the distribution of publications across ratial and ethnic groups and the number of publications related to cancer survivorship. It should be noted that the categorizations may underestimate references to ethnic minority and medically underserved populations in the articles listed. The committee examined whether the indicated specific terms in the following categories actually appeared in the title:

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