Language and Concepts Can Be a Messy Business

In higher education as well as other sectors, the language that we use and the concepts behind them are fundamental. They send a specific message or at least that is the intention of the person using the language. However, that is not often the case. Depending on our background, our experiences, our perception, and our devotion to the canons of a discipline, language and concepts are understood differently by the receiver.

As we think about how to move our work in cancer education to the next level, it will be paramount significance that we transition from describing differences that adversely affect various populations. More often than not, those disparities in cancer research have been defined and described at nauseum. For the last 20 years, when health disparities captured the imagination of mainstream researchers, we have been describing the differences, Black and White, sometime including other vulnerable groups, yet the needle is not moving for vulnerable populations. Henry Ford said, “If you always do what you’ve always done, you’ll get what you’ve always got.” In the last few years, the science and treatment have increased survival from cancer, yet the disparities persist.

We have to make a paradigm shift. Research must now pivot from comparative studies that demonstrate pervasive racial disparities to analytic studies that identify root causes of cancer by focusing on health inequities which are differences in health status, the distribution of health resources between different population groups, arising from the social conditions in which people are born, grow, live, work, and age. Health inequities are deemed to be inherently unfair and unjust. The literature has demonstrated that Blacks for example face an extraordinary cancer burden compared to their White counterparts. Research that focuses on the unique intersectional context in which Blacks live — in studies comprising exclusively of Blacks — is sorely needed from an epidemiological standpoint.

First, primary data collection studies focused on Black-White comparisons rarely include sufficient numbers of Blacks for analyses to stratify by race. This is critical for the study of factors that are unique to Blacks, who not homogeneous. Also, shouldn’t the reference population be the population with the least amount of disease, rather than the dominate social and economic population, otherwise it is not a true disparate comparison? Actually, we are underestimating the real disparity.

Second, the use of Whites as a comparison group is problematic when considering the exchangeability assumption, a central tenet of causation in epidemiological research [1, 2]. Exchangeability requires that we assume that the distribution of cancer observed among Blacks represents the distribution of cancer that would have been observed for Whites, if (contrary to fact) they had been Black. Morgenstern asks, “…do we want to compare the observed outcome risk in a Black population with what the risk would have been if everyone in this population would have been born White? …What variables or conditions would we want to hold constant to assess this contrast — the race of their parents or ancestors, their socio-cultural heritage, their educational and occupational achievements or opportunities, experience with discrimination or injustice…?” [3]. Simply put, Blacks and Whites are not exchangeable, no matter what other lifestyle or socioeconomic factors are similar.

The above challenges our thinking about what we learned from respected professors and mentors. Chambers said “… to do better requires reversals of much that we regard as normal. The challenge is to upend our thinking, to turn values on their heads, to invent and adopt new methods, and to behave differently.” [4].

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