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The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999)
Institute of Medicine (IOM)

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. "Executive Summary." 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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  • special resources to fund programs specifically targeted to these populations, or
  • accountability for the institution-wide allocation of program resources.

Recommendation 4-4: Investigator-initiated research must be supplemented to ensure that the cancer research needs of ethnic minority and medically underserved populations are addressed.

Chapter 5:

Advancing State-of-the-Art Treatment and Prevention

Recommendation 5-1: NIH and other federal agencies (particularly the Health Care Financing Administration) should coordinate to address funding for clinical trials, particularly to address the additional diagnostic and therapeutic costs associated with prevention trials and third-party payment barriers associated with clinical treatment trials.

Recommendation 5-2: NCI should continue to work with other appropriate federal agencies and institutional review boards to explore creative approaches to improving patients' understanding of research and encouraging them to provide consent to participate in research. These approaches should address cultural bias, mistrust, literacy, and other issues that may pose barriers to the participation of ethnic minority and medically underserved groups.

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.

Recommendation 5-4: NCI should continue to assess its dissemination practices to identify effective cancer information delivery strategies among ethnic minority and medically underserved populations, revise and implement the strategic dissemination plan on the basis of the results of that research, and institute an ongoing system of monitoring to assess its effectiveness.

Chapter 6:

Cancer Survivorship

Recommendation 6-1: NCI should establish a strategic plan to address the cancer survivorship needs of ethnic minority and medically underserved

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