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Vanessa Northington Gamble
and Deborah Stone
Excerpted from: Vanessa Northington Gamble and
Deborah Stone, U.S. Policy on Health Inequities: the Interplay of
Politics and Research, 31 Journal of Health Politics, Policy and Law
93- 122, 93-96 (February, 2006) (17 Footnotes)
W. E. B. DuBois, a towering figure of twentieth-century social and
political thought, asserted in his 1903 classic, The Souls of Black
Folks, "The problem of the Twentieth Century is the problem of the
color line--the relationship of the darker to the lighter races of
men" (DuBois 1903: 13). Three years later, in The Health and
Physique of the Negro American, DuBois (1906) and his colleagues
documented racial inequalities in health. Yet despite a century of
activism and research on the problem, inequalities persist.
With the recent resurgence of interest in health inequality among
researchers in the United States and other countries, one pressing
question is how scientific research can best contribute to reducing
health disparities. This article grew out of an international
conference on the relationship between scientific research and
government action in addressing health inequalities. The conference
included participants from six countries who were asked to consider
three questions: First, what is or are the major axis/axes of
inequality in the distribution of health and health care in each
country? Second, what can researchers do to package and disseminate
their research so that it is more likely to be translated into
action? And third, what structural modifications to government
receptor agencies might maximize the likelihood of research uptake
by government? The conference participants were asked to select a
research report that had had or was likely to have a major impact on
policy and to reflect on the characteristics of the report that
contributed to its effectiveness.
As participants representing the United States, we chose to focus on
racial and ethnic disparities in health. Race and ethnicity are not
the only dimensions of health inequality, and indeed, Healthy People
2010, the decennial goal-setting document of the U.S. Department of
Health and Human Services, calls for the elimination of all health
disparities including differences that occur by race or ethnicity,
gender, education or income, disability, geographic location, or
sexual orientation (U.S. Department of Health and Human Services
1998). We chose our focus on race and ethnicity for historical,
political, and philosophical reasons. Because of the U.S. history of
slavery and subsequent de jure and de facto racial segregation and
discrimination, race has long been a strong determinant of access to
care and health status. Therefore, racial and ethnic disparities as
a political and research issue in the United States have a long
history. For over one hundred years, minority communities have
responded to their poor health status and limited access to health
care with research and activism. Racial and ethnic disparities in
access to medical care and in those aspects of health that are
amenable to human intervention violate the American concept of
justice. Finally, racial and ethnic diversity in the United States
is growing and issues of race and ethnicity are not going away. With
this demographic change, racial and ethnic disparities in health
take on a new urgency.
In thinking about the role of research in U.S. policy making, we
realized that the conference framework assumed a certain model of
the relationship between research and policy change: a research
community discovers and documents health inequities and packages and
disseminates its findings, and then the research is either
successfully taken up by government or not. We question such a model
on both theoretical and historical grounds, because it neglects the
role of political action as a catalyst for both research and policy.
Theoretically, thirty years of scholarship on agenda setting and
issue framing have shown that social problems do not become policy
issues just because they exist as problems or even because careful
scientific research has documented that they are problems (Elder and
Cobb 1983; Gusfield 1981; Kingdon 1999; Gamson 1992; Benford and
Snow 2000). Problems such as health disparities must be converted
into political issues by leaders (grassroots, community, political,
religious, and intellectual). Then they must be defined in a way
that government can do something about them with the kinds of tools
it has at hand (legislation, regulation, taxation, financing, and
public education). Only then does a problem begin to make its way
through the political process as something to which government
develops a specific policy response. Thus, to be effective, research
must not only reveal problems but also frame them in a way that they
are perceived as bad situations and moral wrongs that government can
and should fix.
Historically, major changes in the access of minority Americans to
health care came as a result of political action. Most notably,
desegregation of medical institutions (though still not fully
accomplished) came about as part of the broader civil rights
movement (Smith 2001). But as we will show, in the case of racial
disparities in the United States, the mainspring of policy change
has always been political action. Some of that activism generated
scientific research and government reports. We will show that policy
progress on racial disparities in the United States grew from the
interplay of scientific research and political activism.
In this article, we first review very briefly the nature of racial
and ethnic disparities in health. Second, we present a chronological
history of the disparities issue to demonstrate how the continual
and persistent interplay between political action and scientific
research drives government policy. Third, we compare two recent
government-sponsored reports on health disparities: The Health Care
Challenge: Acknowledging Disparity, Confronting Discrimination and
Ensuring Equality, produced by the U.S. Commission on Civil Rights
in 1999, and Unequal Treatment: Confronting Racial and Ethnic
Disparities in Health Care (Smedley, Stith, and Nelson 2003), issued
by the Institute of Medicine (IOM) in 2002. We chose these two
reports because they frame the issue of racial disparities very
differently and represent the politics-research dichotomy that we
wished to explore. The U.S. Commission on Civil Rights report framed
racial inequalities in health primarily as a problem of political
action and law enforcement; the Institute of Medicine report framed
them primarily as a problem of understanding the causes of
disparities through scientific research. We compare the strategic
advantages and disadvantages of each framing for mobilizing
government action. Last, we draw lessons from our analysis about how
disparities research can have a greater impact on public policy. We
emphasize that research must go beyond documenting inequalities to
developing the political will to redress them.
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