Although health care-related distrust may be an important contributor to racial disparities in health and health care in the US, the empirical data about racial differences in distrust are limited and often conflicting. In this study, we demonstrate that racial differences in distrust of the health care system arise from differences in values distrust rather than from differences in competence distrust. In addition, we demonstrate that this racial difference in values distrust is not explained by differences in socioeconomic status, health or psychological status, or health care access.
These results suggest a novel framework for understanding racial differences in distrust that may underlie the mixed results of prior studies and provide guidance for future studies in this area. In this framework, racial differences in distrust exist but are focused on concerns about values distrust rather than equal across domains. In addition to the empirical results of this study, this framework is grounded in theoretical and empirical research in social psychology demonstrating the 2 dimensions of trust (values and competence) and analyses of the impact of historical and current racism on minorities’ perceptions of the health care system’s values. Although our study focused on health care system distrust, this differential relationship between race and different domains of trust or distrust may also exist for other types of health care-related trust/distrust, such as distrust of personal physicians. Because most other scales of health care trust or distrust have been found to be unidimensional in psychometric analyses, it may be reasonable to examine patterns in racial differences across items. Future studies examining race and distrust should consider the possibility that racial differences in distrust are more complex than mean differences in overall scores and ensure that measures can capture this complexity.
Racial difference in values distrust may have implications for racial differences in health care and health outcomes. As noted previously, distrust has been demonstrated to decrease the frequency of transactions and increase the costs of monitoring and regulation in many segments of society.1,2,45
Similarly, health care system distrust may lead to lower rates of effective health care and greater use of unnecessary testing and potentially even ineffective interventions. However, the empirical evidence supporting the effect of distrust on health or health care is limited. Several studies have found that lower levels of trust are associated with lower rates of preventive service use,14,15,46
adherence with physician recommendations,5,47–49
and changing physicians.48,50,51
In a separate study, we recently demonstrated that our previous measure of health care system distrust is associated with worse self-reported health status (as was seen in this analysis), but we did not examine the pathways linking distrust and poor health.4
A recent analysis of a public health survey in Sweden demonstrated a similar association between health care system distrust and poor self-reported health status and found that use of health care services explained a significant proportion of this association.52
In the current study, the association with health status was stronger for values distrust than competence distrust. Furthermore, given the imperfect nature of health care, it is possible that some level of distrust is protective when trustworthiness is not high.53
More studies are needed to understand the “downstream effects” of this pattern of racial differences in health care system distrust.
Although part of the appeal of studying distrust is the theoretical potential to intervene to reduce distrust and improve health care, relatively little guidance is currently available about how best to reduce distrust in general or to address racial differences in values distrust in particular. A relatively recent Cochrane review concluded that “overall there remains insufficient evidence to conclude that any intervention may increase or decrease trust in doctors.”54
Even less evidence exists about health care system trust or distrust with no published controlled studies of strategies to increase trust. Although our results are not focused on intervention development, the pattern across the items in Table suggests that 2 specific beliefs—about experimentation and lying to make money—are important contributors to racial differences in distrust and that strategies that address these 2 issues may be particularly effective for reducing racial disparities in values distrust. Addressing the legacy of Tuskegee is often suggested as a method for reducing concerns about experimentation among blacks; however, current studies suggest that knowledge of Tuskegee is relatively low and not correlated with distrust or willingness to participate in research.55,56
Educational and policy efforts targeting concerns and ethical issues with current biomedical research may be a more effective intervention strategy than targeting concerns about Tuskegee. Addressing the concern about lying to make money may require both fundamental change in current models of health care financing and leadership, as well as focused strategies to educate and inform patients about these issues.27,57
We found very few factors that were significantly associated with either competence or values distrust other than race. Values distrust was significantly higher among younger individuals and among individuals with higher household incomes. It is interesting to note that prior studies have found conflicting results about the association between income and distrust with some studies demonstrating higher levels of trust in physicians among patients with higher incomes,58
others finding no association with income,59
and others demonstrating higher levels of trust in patients with income <$20,000 a year as we found in this study.23
Similarly, increasing age has been correlated with higher levels of trust in a provider15
and with lower levels of trust in the medical profession in general.59
More research is clearly needed to understand the relationship between these basic sociodemographic characteristics and patterns of health care-related trust and distrust.
This study has several limitations. The sample was restricted to the patient population of a single, urban health system in the Mid-Atlantic region and it is possible that the pattern of distrust would be different in other populations. Our sample size was adequate for testing our hypothesis about racial differences in values and competence distrust but provided only limited power for exploring other associations with distrust, including measures of health care access. Larger studies with more diverse samples are needed. Although we had a reasonable response rate, response bias remains a concern. Responders differed from nonresponders in several ways, although not in racial breakdown. Some of these differences reflect the difficulty of reaching low socioeconomic status individuals for follow-up research (e.g., higher rates of uninsurance among nonresponders) and may lead the concerns of these groups to be underrepresented in this study and other areas of clinical research. The lack of difference in race reduces the concern that the inclusion of nonresponders would have changed the primary study findings of racial differences in the patterns of distrust.
In summary, this study suggests that racial differences in health care system distrust are complex with far greater differences seen in the domain of values distrust than in competence distrust. This framework may be useful for explaining the mixed results of studies of race and health care-related distrust to date, for designing future studies exploring the causes of racial disparities in health and health care, and for the development and testing of novel strategies for reducing these disparities.