What are some examples of the cancer disparities among American Indian and Alaska Native people?AI/AN populations have the lowest survival rates for nearly all types of cancer of any subpopulation in the United States, with cancers often detected at later stages. To get a better picture of cancer incidence and mortality in these diverse groups, we have to break down the AI/AN populations by different regions of the country. For example, in the Northern Plains lung cancer is more prevalent among American Indians than among non-Hispanic whites. In the Southern Plains, AI men are more likely than white men to die from colorectal cancer; and in Alaska and the Northwest region, the rate of breast cancer is higher among AI/AN women than among white women.
Do we know what's behind these disparities?Lung cancer is more prevalent among American Indians in the Northern and Southern Plains primarily because of the higher rate of tobacco use. However, because AI communities use tobacco for traditional purposes, cancer control efforts in these populations must recognize and respect the use of tobacco for traditional and sacred purposes. Another example is among American Indians in the Southwest, where colorectal cancer screening rates are lower than in the general population due to multiple factors. These factors include a lack of information about the need to get screened and at what age to get screened, as well as inadequate promotion of screening by health care systems. Lack of access to health care for AI/AN people is also a factor in the disparities in colorectal cancer–related incidence, mortality, stage at diagnosis, and survival.
What are some of the unique challenges that researchers face in trying to study cancer control in these populations?It’s hard to understand and study cancer incidence and mortality in AI/AN communities as a whole because they are not a homogeneous group. There are more than 550 federally recognized tribes in the United States, as well as many that are not recognized at the federal level. About 300 federally recognized tribes live in Alaska alone. The issue of trust is also important because there is a history of broken treaties and broken promises. And trust includes issues of ethics and respect and preventing the misuse of data. Because of this history, tribes now take very seriously the review of protocols for a study. They want to be true partners in studies, and they require that the information be given back to their communities in a way that is easily understood and explained, so that they can use the information to improve the health of the people in their communities. Some researchers do a very good job of sharing their findings with tribal communities, but it requires a lot of patience and relationship building to make sure that it's done well and that the research is conducted ethically.
Studying Small Populations In January 2018, NCI co-sponsored a workshop on improving health research on small populationsExit Disclaimer. The workshop, held at the National Academies of Sciences, Engineering, and Medicine, covered issues, such as research methods and ethical concerns, to consider when conducting health research on small, underrepresented population subgroups, including AI/AN communities. A report from the workshop will be released in June 2018.There's also the question of who ultimately owns the data and how the data will be used and published. The issue of data ownership is an issue of sovereignty for the tribes, because in the past some researchers have used the data for something other than the purpose of the original study without the tribes' knowledge. Another challenge, at least as far as NCI is concerned, is that AI/AN populations are small populations, and randomized clinical trials typically require reasonably large numbers of participants to be statistically rigorous. These are some basic rules and concepts that we need to understand before we initiate research with AI/AN populations. Our methods, our approaches, and the formulation of our research questions must involve thinking outside the box of our traditional assumptions and the range of issues we usually deal with when studying cancer control.