No data, no problem

Okay, I said I'd talk about my day job so here's installment number one.

It is a national goal (established by Bill Clinton, although it's much more important that he was adulterously fellated) to eliminate racial and ethnic disparities in health by 2010. Ain't gonna happen, obviously, but just like VICTORY in Iraq, it's still the goal. One essential precondition for achieving a goal is knowing how far away you are, in what direction it lies, and whether you are making progress or not.

Unfortunately, the information we need to pursue this particular goal is woefully inadequate. Much of what we do know I have discussed here previously, for example here and here. But what we don't know is considerably more vast.

The vast majority of available data on health disaparities -- from important sources including vital records (birth and death certificates), disease surveillance systems, and programmatic databases of state health departments -- use the federal standards for racial and ethnic identification. These are the familiar 5 races -- White, Black, Native American, Asian and Pacific Islander -- and two "ethnicities" -- Hispanic and not Hispanic.

Today, the 19th Century concept of race on which these classifications are based has been discredited. The races were essentially thought to be biological sub-species of humanity, in which the highly visible traits used to define them – principally complexion – were correlated with other important genetically determined traits, such as intelligence and temperament. It is now understood that the division of humanity into these five groups, and various schemes of sub-groupings, was based on socially determined prejudices, not scientific data. Genetic variation within the "races" is far greater than the variation between them; and the selection of different traits as the determining factors would result in entirely different sets of "races."

Particularly absurd is the Asian "race," which includes Japanese, Chinese, and Filipinos. The Philippines, of course, are not located in Asia. They are literally Islands in the Pacific. What is more important, the nation is multi-ethnic and, to the extent one wishes to accept the racial construct, multi-racial. Inhabitants of the Philippines include indigenous people, descendants of Spanish colonialists, and Chinese and other settlers. Only some of these people are arguably of Asian "race." Furthermore, it is conceptually troubling to invent, as the census has done, Chinese, Japanese, Pakistani, and Indian "races," which only compounds and elaborates the error of thinking in racial terms. Step across the border from Pakistan to Afghanistan, by the way, and you instantly turn "White."

The separate "Hispanic ethnicity" category co-exists awkwardly with the race classifications. "Hispanics" are also asked to choose a "race," but the plurality (42%) chose "other" in the 2000 census. It is difficult to see why a person may be of Chinese, Filipino, Black, Native American or Hawaiian "race," but can only be of "Hispanic" ethnicity. Important, ethnically distinct immigrant groups such as Brazilians, Haitians, and persons from the English speaking Caribbean are entirely invisible in this system. Haitians may choose Black as their race, but they are culturally quite distinct from descendants of slaves brought from Africa in the 18th Century - the ethnic group African Americans. Brazilians, in fact, don't exist in this system at all, anywhere - they aren't "Hispanic" (they speak Portuguese). Immigrant groups from Africa, Arabs (who are officially White, whether they like it or not), Cape Verdeans -- none of them exist.

The Hispanic category is also constructed by the dominant culture. Nobody is "Hispanic" until they arrive in the U.S. They are Argentinian, Mexican, Colombian, Salvadoran. They may belong to ethnic groups within those countries, such as Argentinian Jews, Quechua speaking indigenas, or Chinese-Dominicans (such as one of my former research assistants). But now they are all just "Hispanic." There are huge differences in health status and experience in the health care system among these groups.

Then there are the very important systems in which there is no racial or ethnic identification at all, or it is highly unreliable, or it consists only of "black" and "white." Examples are the hospital discharge systems (which record diagnoses), HEDIS (health plan and hospital quality assurance data), some important large-scale health surveys, and others.

But, if we can't see the problems -- whether in social determinants of health, access to health care, quality of care received, or outcomes of care -- they might as well not exist, from a public policy point of view. We won't have to do anything about it. That is very convenient.

Most people think the solution to this problem must be very difficult. It isn't. More on that soon.