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Credit: CDC
Researchers have identified significant variations in how cancer centers gather data, particularly that pertaining to racial and ethnic minorities.
Although racial and ethnic categories were similar across the centers, those categories were defined differently.
And the centers’ definitions of “catchment area,” the geographic region they expect to influence with their programs, differed widely.
This research, published in Cancer, was part of a national effort to recruit more racial/ethnic minorities into clinical trials and, ultimately, reduce the disproportional incidence of many cancers among those populations.
Five National Cancer Institute-designated comprehensive cancer centers participated in the endeavor, known as EMPaCT—Enhancing Minority Participation in Clinical Trials. They were:
- University of Minnesota, Minneapolis, which represents the Midwest and targets the accrual of Native Americans and African Americans
- University of Alabama, Birmingham, representing the Southeast, targeting African Americans
- Johns Hopkins University, representing the East, targeting African Americans
- University of Texas MD Anderson, Houston, representing the Southwest, targeting Latinos
- University of California, Davis, representing the West, targeting Asian Americans.
Ernest T. Hawk, MD, of the MD Anderson Cancer Center, and his colleagues reviewed the collection and reporting of patient data and other practices by these 5 centers.
This revealed significant variation in the centers’ methods of data collection. For example, patients’ insurance status was routinely documented at 2 centers, collected for non-research patients only at a third center, collected for billing of researcher enrollees at a fourth center, and not documented at all at a fifth center.
There were differences in data collection according to race/ethnicity as well. Racial/ethnic categories were generally similar across the centers—white, black/African American, Asian, Native American, Hispanic/Latino, and “other/unknown.”
However, the means of race/ethnicity data collection differed. Each center collected self-reported data on race/ethnicity, but 2 centers included data from staff observations.
Two centers compared the proportions of racial/ethnic groups enrolled in trials with those of their catchment area(s). But the others did not.
The centers also differed in how they defined their patient catchment area, in terms of their cancer patient-vs-general-population specificity, levels of specificity, and geographic coverage.
That merits notice, according to the researchers, because National Cancer Institute cancer centers are required to accrue women and minorities to clinical trials in rough proportion to the cancer patient population of the center’s primary catchment area.
Given these findings, the researchers recommended better standardization of data definition, collection, and reporting as an essential first step toward expanding minority participation in clinical trials.
The team also advised that cancer centers collect socioeconomic data, including a patient’s income and education levels, given past evidence of the strong link between socioeconomic status and cancer outcomes.
Finally, the group recommended collecting patient zip codes and insurance status to allow researchers to assess differences in access to clinical trials that may be related to geography and the availability of health insurance coverage. 
Credit: CDC
Researchers have identified significant variations in how cancer centers gather data, particularly that pertaining to racial and ethnic minorities.
Although racial and ethnic categories were similar across the centers, those categories were defined differently.
And the centers’ definitions of “catchment area,” the geographic region they expect to influence with their programs, differed widely.
This research, published in Cancer, was part of a national effort to recruit more racial/ethnic minorities into clinical trials and, ultimately, reduce the disproportional incidence of many cancers among those populations.
Five National Cancer Institute-designated comprehensive cancer centers participated in the endeavor, known as EMPaCT—Enhancing Minority Participation in Clinical Trials. They were:
- University of Minnesota, Minneapolis, which represents the Midwest and targets the accrual of Native Americans and African Americans
- University of Alabama, Birmingham, representing the Southeast, targeting African Americans
- Johns Hopkins University, representing the East, targeting African Americans
- University of Texas MD Anderson, Houston, representing the Southwest, targeting Latinos
- University of California, Davis, representing the West, targeting Asian Americans.
Ernest T. Hawk, MD, of the MD Anderson Cancer Center, and his colleagues reviewed the collection and reporting of patient data and other practices by these 5 centers.
This revealed significant variation in the centers’ methods of data collection. For example, patients’ insurance status was routinely documented at 2 centers, collected for non-research patients only at a third center, collected for billing of researcher enrollees at a fourth center, and not documented at all at a fifth center.
There were differences in data collection according to race/ethnicity as well. Racial/ethnic categories were generally similar across the centers—white, black/African American, Asian, Native American, Hispanic/Latino, and “other/unknown.”
However, the means of race/ethnicity data collection differed. Each center collected self-reported data on race/ethnicity, but 2 centers included data from staff observations.
Two centers compared the proportions of racial/ethnic groups enrolled in trials with those of their catchment area(s). But the others did not.
The centers also differed in how they defined their patient catchment area, in terms of their cancer patient-vs-general-population specificity, levels of specificity, and geographic coverage.
That merits notice, according to the researchers, because National Cancer Institute cancer centers are required to accrue women and minorities to clinical trials in rough proportion to the cancer patient population of the center’s primary catchment area.
Given these findings, the researchers recommended better standardization of data definition, collection, and reporting as an essential first step toward expanding minority participation in clinical trials.
The team also advised that cancer centers collect socioeconomic data, including a patient’s income and education levels, given past evidence of the strong link between socioeconomic status and cancer outcomes.
Finally, the group recommended collecting patient zip codes and insurance status to allow researchers to assess differences in access to clinical trials that may be related to geography and the availability of health insurance coverage.
Credit: CDC
Researchers have identified significant variations in how cancer centers gather data, particularly that pertaining to racial and ethnic minorities.
Although racial and ethnic categories were similar across the centers, those categories were defined differently.
And the centers’ definitions of “catchment area,” the geographic region they expect to influence with their programs, differed widely.
This research, published in Cancer, was part of a national effort to recruit more racial/ethnic minorities into clinical trials and, ultimately, reduce the disproportional incidence of many cancers among those populations.
Five National Cancer Institute-designated comprehensive cancer centers participated in the endeavor, known as EMPaCT—Enhancing Minority Participation in Clinical Trials. They were:
- University of Minnesota, Minneapolis, which represents the Midwest and targets the accrual of Native Americans and African Americans
- University of Alabama, Birmingham, representing the Southeast, targeting African Americans
- Johns Hopkins University, representing the East, targeting African Americans
- University of Texas MD Anderson, Houston, representing the Southwest, targeting Latinos
- University of California, Davis, representing the West, targeting Asian Americans.
Ernest T. Hawk, MD, of the MD Anderson Cancer Center, and his colleagues reviewed the collection and reporting of patient data and other practices by these 5 centers.
This revealed significant variation in the centers’ methods of data collection. For example, patients’ insurance status was routinely documented at 2 centers, collected for non-research patients only at a third center, collected for billing of researcher enrollees at a fourth center, and not documented at all at a fifth center.
There were differences in data collection according to race/ethnicity as well. Racial/ethnic categories were generally similar across the centers—white, black/African American, Asian, Native American, Hispanic/Latino, and “other/unknown.”
However, the means of race/ethnicity data collection differed. Each center collected self-reported data on race/ethnicity, but 2 centers included data from staff observations.
Two centers compared the proportions of racial/ethnic groups enrolled in trials with those of their catchment area(s). But the others did not.
The centers also differed in how they defined their patient catchment area, in terms of their cancer patient-vs-general-population specificity, levels of specificity, and geographic coverage.
That merits notice, according to the researchers, because National Cancer Institute cancer centers are required to accrue women and minorities to clinical trials in rough proportion to the cancer patient population of the center’s primary catchment area.
Given these findings, the researchers recommended better standardization of data definition, collection, and reporting as an essential first step toward expanding minority participation in clinical trials.
The team also advised that cancer centers collect socioeconomic data, including a patient’s income and education levels, given past evidence of the strong link between socioeconomic status and cancer outcomes.
Finally, the group recommended collecting patient zip codes and insurance status to allow researchers to assess differences in access to clinical trials that may be related to geography and the availability of health insurance coverage.