The Unequal Burden of Cancer An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved (1999) / Chapter Skim
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7 Monitoring and Reporting
7 Monitoring and Reporting
Pages 246-260
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From page 246... ...
The committee first reviewed prior congressional requests relevant to the reporting of cancer research in general. A prior Senate Committee on Appropriations had expressed concern about the increasing incidence of cancer and rates of mortality from cancer, especially among people ages 55 and older (U.S.
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From page 247... ...
The legislation stated that "cancer crosses all groups in America, but often takes its deadliest toll among minorities and the medically underserved." As examples, it quoted a higher rates of cervical cancer among Hispanic women and prostate cancer among African-American men, and lower rates of survival from lung cancer among Native Americans. The latter Senate committee expressed similar concern about cancer among ethnic minority and medically underserved populations that the prior Senate Committee on Appropriations had expressed about cancer among older members of the general population.
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From page 248... ...
The problem, then, is to find a method of reporting on cancer information that routinely includes data on ethnic minority and medically underserved populations without at the same time Producing an excessive amount of data. Health statistics are usually described as rates that are calculated from a numerator (numbers of people affected)
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From page 249... ...
In addition, in reporting on ethnic minorities it is useful to present data on the rest of the population to make the classification complete for purposes of comparison. The top margin of a summary table on cancer mortality could be as follows: Ethnic Ethnic Ethnic Group A Group B Group C Ethnic All Group D Others Total Medically Underserved Populations Data on the medically underserved population are not usually included in cancer statistics reports.
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From page 250... ...
In that case the data for medically underserved and non-medically underserved individuals would be shown for each ethnic group. For the sake of clarity, however, it might be best to show the relationship between the two variables and cancer in separate tables, and until the data for medically underserved individuals can be incorporated into source documents, it may be necessary to obtain the information by performing special studies or by linkage with other databases.
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From page 251... ...
Aggregation of deaths from cancer from those causing the highest rate of mortality to those causing the lowest rate of mortality is only one approach to the problem. The Breslow Committee suggested consideration of three other alternatives: cancers that can be grouped according to preventable cancers, cancers that can be controlled by timely screening and detection, and cancers against which efficacious treatments exist (Extramural Committee to Assess Measures of Progress Against Cancer, 1990~.
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From page 252... ...
population based on the lowest rates of each of the leading causes of cancer in any ethnic group. Using this as a reference population, one could compare the number of deaths that now occur in each ethnic group with the number of deaths that would have occurred in the hypothetical population with the best rates at major sites drawn from any ethnic group.
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From page 253... ...
FIGURE 7-1 Estimated average annual excess deaths due to cancer by U.S. ethnic group, 1990-1995.
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From page 254... ...
Goals were not set for prostate cancer, awaiting evidence of methods of effective prevention or treatment. In some cases Healthy People has set specific targets for some ethnic minority groups.
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From page 255... ...
827~. This would have been true with respect to ethnic minority and medically underserved populations.
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From page 256... ...
Under these circumstances it is most critical to consider additional measures, but consideration of all available measures helps to clarify the rates of mortality from cancer and may suggest additional areas where improvements are possible. In addition to the direct measures of the rate of mortality from cancer, the incidence rate, the survival rate, and quality of life, the Breslow Committee recommended the inclusion of indirect measures (Extramural Committee to Assess Measures of Progress Against Cancer, 1990~.
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From page 257... ...
The Senate Committee report suggests that it wants to know about an NIH strategy for specifically targeting the cancer research needs of these groups over and above a general statement of inclusion. For this reason the Senate is not likely to be impressed by statistical analyses that ignore the questions concerning the relative share of NIH resources allocated to cancers disproportionately affecting medically underserved and ethnic minority populations.
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From page 258... ...
It would appear that NCI has not given enough attention to this matter and that it may be necessary for some other entity to fill this gap, especially for ethnic minority and medically underserved populations. This method of reporting would emphasize both results and process and would suggest possible changes in strategy.
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From page 259... ...
To address the additional concerns of Congress with respect to ethnic minority and medically underserved populations, it has been suggested that a special section of the appropriate reports include
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From page 260... ...
Congress and public constituencies. Such reports should · report on data on progress against cancer using the nomenclature "ethnic groups" rather than "racial" groups and include data on medically undersexed populations with ethnic croup data: ~ ~ , · provide data on the incidence of cancer at several cancer sites, including those cancers that disproportionately affect ethnic minority and medically underserved populations; · consider as one alternative reporting of mortality data in terms of "potential reduction of deaths," a statistic that is based on the lowest mortality rate among U.S.
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