. "5 Advancing State-of-the-Art Treatment and Prevention." 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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Although it is not known what data are needed to suggest that treatments are likely to affect ethnic minority individuals differently from the ways in which they affect whites, attention to this consideration is needed. More research into the biological, genetic, and pathophysiological considerations of differences in certain cancers among ethnic groups would be helpful in this regard.
Data on the retention of ethnic minorities and medically underserved individuals in treatment and prevention trials have not been addressed in prior NCI reports. Retention in trials, however, is also likely to be problematic for many ethnic minority groups and medically underserved populations. The committee urges routine collection and analysis of data for patients who have dropped out of clinical trials, as well as for those who have been retained, to determine if there are patterns among these groups that may lead to better prediction of who is more likely to drop out and to potential intervention strategies. In addition, the committee urges that NCI require clinical trial investigators to report on the accrual of medically underserved patient populations, including rural residents, low-income individuals, individuals with low levels of literacy, and medically indigent populations. This information should be reported publicly by NCI as part of its effort to inform scientists, health advocates, policy makers, and the general public of progress in clinical trial accrual.
Recommendation 5-3: NCI should report on the accrual and retention of ethnic minority and medically underserved populations in clinical trials using a consistent definition for medically underserved populations, including such characteristics as rural versus urban population, insurance status, socioeconomic status, and level of literacy.
Dissemination of Research Findings to Ethnic Minority and Medically Underserved Communities
As noted above, the committee is charged with reporting on "how well research results are communicated and applied to cancer prevention and treatment for minorities." The term research results is very vague, ranging from poster sessions at a conference and publications available through a MEDLINE search to clinical practice guidelines. Similarly, the term dissemination covers both health care providers and consumers at large. Therefore, for the purposes of this report, the committee interpreted both terms very broadly as the dissemination of scientific information with regard to standards of care. The committee did not separate among cancer prevention, screening and diagnosis, or treatment and follow-up. The committee also looked at literature related to a variety of cancer sites and did not