Our evaluation of the 34 measures identified in the medical or psychological literature that assess individual perceptions of experiences of racism or discrimination in their environment revealed than only 16 such measures were specifically developed for or relevant to experiences in the health care setting. Of these measures, half included only a single item.23,26,38,39,44,46,48,50
The remaining measures were limited by their sole focus on the experiences of African Americans without inclusion of experiences of other minority groups12,36,42,43,52
or by their use of questions about only general experiences (e.g., being treated with less courtesy, disrespect, or poorer service).8,13,35
We view these as significant limitations of the available measures. Without attention to how patients feel about their experiences of racism, or how bothersome the experiences of racism/discrimination were, or how such experiences specifically affect the medical care provided, it is difficult to assess the impact of racism/discrimination on patients’ care. Thus, the existing measures are useful to characterize the general
experiences of patients of color, particularly African Americans, in obtaining medical care, similar to patient satisfaction measures’ gestalt ratings of care, but the existing measures cannot inform the field regarding the specific
impact of racism/discrimination on treatment recommendations or health care decisions.
We recommend that researchers refine and extend existing measures or develop new measures that specifically assess racism in the health care setting and the ways in which it affects medical care, since the ultimate impact of racism/discrimination in this setting differs from that of, for example, experiences in the general community.
Only 8 of the 34 publications reported asking respondents about the kinds of responses, whether active or passive, they had to racism.8,23,30,38,46–49
We view this as a limitation in the majority of the existing instruments. Without an understanding of individuals’ responses to racial discrimination, research cannot evaluate how troubling or significant the experiences were, nor elucidate how such experiences ultimately affected the provision of health care.
According to some researchers, measures should avoid global questions, due to the likelihood of underestimating exposure to experiences of racism.21
Examples include the single-item global measure of racism10,31
such as ever
experiencing racism and questions using the term unfair treatment
These questions may be too vague to apply to the race-based experience of the individual.23,27,46
Furthermore, the generic experience of unfair treatment can be generalized to all people who have such experiences. We believe it is vital to anchor questions about unfair treatment to the issue of race/ethnicity specific to the health care encounter in order to provide specific information for policy implementation and interventions in the health care setting.
In addition to asking about individuals’ experiences, it may be helpful to ask questions about family and/or group experiences, as some measures did.38,50
Individuals may deny racism to avoid feeling that they do not have control over situations, and some prefer not to recall such memories.56–59
A few studies indicate that some minority group members tend to minimize racism and attribute their failure to themselves (internalized racism).58,60
Consequently, some experiences of racism may be underreported. Since minimizing recall of racism may be psychologically benefficial to the individual,60
future instruments should be designed to be sensitive to the tendency of individuals to deny reports of racism, without undermining it.40
Past research indicates that everyday discrimination
, often referred to as chronic exposure
to racism, is a better predictor of health status than major (acute
Furthermore, chronic perceived racism may affect health care utilization and subsequent health outcomes.12
Thus, we recommend that measures include assessments of chronic racism and racism in society in general, because including them may provide important information about potential confounders and effect modifiers of the true racism exposure-health outcome relationship in the health care setting.41
Current measures of experiences of racism are subject to several methodological pitfalls. For instance, in order to measure accumulated exposure to racism, respondents are generally asked to indicate whether they have experienced racism within a certain time span. Yet, timing of experiences (e.g., ever
or past month
) may introduce recall bias since people tend to forget experiences over time.30,41
It may be more benefficial to include a one-year reference period when asking about racism, according to the literature on stressful life events.2
Comparison of measures was challenging because some focused on the frequency while others focused on the severity of racism.31
People sometimes forget about the intensity of an experience over time,41,62
and the nature of racism in the U.S. has changed over time as well, becoming less overt.18,29,30,41,62,63
We recommend asking questions about both subtle and overt experiences of racism, within a specified time frame.
The absence of a clearly elucidated theoretical framework for many of the measures we reviewed is a matter of concern. To be able to measure the existence and extent of racism, it is necessary to have a theory of how racism might occur and what its effects might be. Without such a theory to guide measure development, analysts may conduct studies using invalid measures that do not have interpretable results. Thus, we recommend that future measures be anchored in theory, such as Lazarus and Folkman’s view of stress, as described above.
Using the same measure across diverse groups of people can be conceptually and psychometrically problematic. As a result, issues and concerns addressed in the design of an instrument to assess perceived racism may not be relevant to the population being studied, because measures were not developed with this population in mind. Inclusion of information about subgroups within racial/ethnic minority populations may allow for better analysis of cultural influences on perceived experiences of racism.10
Although nearly half of the measures reviewed in our collection of publications were psychometrically evaluated, most focused on the experiences of African American populations, and fewer focused on those of other racial/ethnic groups. As the U.S. population becomes increasingly diverse, due in part to the rapid growth of the Hispanic population, it will become imperative to assess accurately the experiences of various groups. We advocate continued development of new measures or enhancement of existing measures to ensure that psychometrically and conceptually valid instruments are applicable to more diverse population groups.
This review was limited in several ways. We focused on perceptions of racism and discrimination instead of more objective assessments (although, to our knowledge, few objective tools are available). Second, patient perceptions may not be the best tool with which to document structural or institutional discrimination, which are often invisible to individual participants. Thus, the fact that racial and ethnic minorities often receive care in poorer quality facilities undoubtedly leads to worse outcomes, but it would be hard for an individual to perceive such differences. Finally, individuals from racial/ethnic minority backgrounds may perceive poor treatment in the health care setting as being a function of race, which may not be the case. Despite these limitations, the data from this review document the state of the art in measuring racism/discrimination in the health care setting, and provide important direction for future measurement development and refinement.
Research on the contribution of provider behavior to disparities in medical care is in its infancy, and there have been few studies specifically designed to test the effect of provider and health care personnel behavior on these disparities.3
Further study is needed to validate the hypothesis that provider behavior during encounters is independently influenced by patient race/ethnicity.3
Furthermore, most of the prior measures of perceived racism have focused on the experiences of African Americans, with less emphasis on other population groups. There is an obvious gap in the literature to address the potential contribution of provider behavior to disparities in medical care for American Indians/Alaskan Natives, Asians, and Hispanic populations. Therefore, to meet the challenge of explicitly measuring other racial/ethnic minority populations’ experiences, new methods and approaches for measuring perceived racism in health care settings are needed. The information provided by such studies may help to design interventions intended to ameliorate the provider contribution to disparities in care for diverse racial/ethnic populations.