In the report Crossing the Quality Chasm,
the Institute of Medicine28
identifies patient-centeredness and equity as essential components of health care quality. Shared decision making is an important component of patient centeredness, and there is evidence that racial inequities exist in SDM between patients and their physicians.3
Race may potentially affect shared decision making in several ways: racial differences in patient SDM preferences or behaviors, racial differences in provider SDM preferences or behaviors, and aspects of the patient-provider relationship (e.g., patient mistrust, cultural discordance, provider bias). Because of the dyadic nature of shared decision making, patient behaviors to engage in SDM must be accurately interpreted as well as reciprocated by physicians in order for SDM to fully occur.
To date, there has been little research into racial differences in patient factors related to shared decision making. To our knowledge, this is the first study to examine racial differences in decision-making preferences among patients with diabetes. Our research suggests that African Americans with diabetes may be as likely as whites from a similar social class to want to participate in 3 key SDM domains measured in this study—agenda setting, information sharing, and decision making. This is an important finding for several reasons.
First, diabetes is a chronic disease that requires ongoing treatment decisions and daily self-management. There is evidence that patients who share in the decision-making process may have greater diabetes self-efficacy, participate more in diabetes self-management, and may be more likely to adhere to plans of care.22
Such factors may account for the higher levels of diabetes control among patients who share in the decision-making process with their physicians.2
Consequently, enhancing SDM among African Americans may be a significant mechanism for reducing diabetes health disparities. Our results are fundamentally important to efforts aimed at encouraging SDM among African Americans, such as the development and uptake of decision aids and patient empowerment interventions. Second, our study is important because it provides additional information about SDM preferences among vulnerable populations. For example, persons with lower levels of education were shown to be more likely to prefer passive roles. Prior research shows that people from lower levels of socioeconomic status (SES), who generally have lower levels of education, prefer such roles.29
It is reassuring that race does not appear to predict such preferences, at least among patients with diabetes. Levinson and others30
conducted a national study of US households and found that African Americans and whites had similar preferences for obtaining medical knowledge and reviewing treatment options with their physicians, but African Americans were more likely to defer actual treatment decisions to their physician. In contrast, we found that African Americans were just as likely
as whites to prefer a shared role in each of the 3 domains, including making treating decisions (adjusted OR: 1.15 [0.82, 1.61]). The reasons for the differences between the 2 studies are unclear but may reflect clinical differences in the patient population. Although both study populations had similar characteristics regarding age, gender, and education, all patients in our study had at least 1 chronic disease (diabetes), unlike the participants in the study by Levinson and others. Because patients with chronic disease are more likely to prefer an active role in clinical decision making,29
the African Americans in our study may have been more active than those in the study by Levinson and others. In addition, all of the persons in our study were patients with at least 1 visit to their physician in the prior year, and this may have selected a population who was generally more proactive about their health than those in a community-based sample. Finally, it is also possible that our patients’ decision-making preferences were influenced by experiences within the community HCs. Because HCs have a mission to provide care for medically underserved populations, such centers may have an organizational culture that facilitates the involvement of vulnerable patients in their own health care decisions.
In addition to patients’ expressed preferences
for shared decision making, we were interested in whether there were racial differences in patients’ behaviors
that may facilitate SDM, such as active information seeking. To our knowledge, this is the first study that explores this issue. Our study suggests that African Americans with diabetes may be more likely
to start discussions with their physicians about their health care. African Americans were more likely to report starting discussions about 4 of the 6 queried areas of diabetes care (blood pressure, microalbumin, eye exams, foot exams) but not lipid testing or HbA1c testing. Blood pressure measurement had the strongest statistical association with race, which may reflect the effectiveness of public health campaigns at educating racial/ethnic minorities about the importance of blood pressure control.31,32
When all 6 measures were combined into a single composite item, African Americans had a 78% higher odds (OR: 1.78 [1.10, 2.89]) of reporting initiating discussions with their physicians about their diabetes care. However, it is not currently known whether patient-initiated health care discussions are sufficient to enhance all aspects of shared decision making.
It is not clear why African Americans and whites had similar preferences for shared decision making, yet African Americans were more likely to report asking questions about their diabetes care. It is possible that the African American patients in our study had greater self-efficacy than white patients and were more able to act upon desires for a shared role. Because patient self-efficacy was not measured in this study, no conclusions can be drawn about this possible mechanism. However, a study of racially diverse patients receiving care at a safety net hospital found no differences in diabetes self-efficacy between African Americans and whites,33
suggesting that differences in self-efficacy may be unlikely causal mechanisms for observed racial differences in our study.
An alternative explanation is that the African Americans initiated diabetes care discussions more often than whites in response to physician behavior. Physicians may have spent more time discussing diabetes care with white patients, thereby decreasing the need for such patients to initiate discussions themselves. Studies have also found that physicians are less likely to deliver information and discuss treatment plans and preventive health care (but are more likely to ask about substance abuse and medication adherence) with African American patients and those from lower socioeconomic classes than more advantaged patients, even in the same clinical care setting.34–36
Primary care physicians are also more likely to use “narrow biomedical” communication patterns (which have a restricted focus and are characterized by physician-dominant talk), in comparison to “biopyschosocial” communication patterns (characterized by more collaboration with patients and less physician verbal dominance), with African American patients in comparison to white patients.37
Thus, in our study, it is plausible that physicians may have engaged African American patients in SDM regarding their diabetes care to a lesser degree than white patients. If so, it is unclear whether information-sharing behaviors (i.e., active information seeking) by African American patients were sufficient to achieve shared decision making in other domains.
Our research suggests that, among African American diabetes patients receiving care at community health centers, patient preference or patient behaviors may not be the cause of racial differences in shared decision making. Exploring potential provider barriers to engaging such patients is an important area of future work. It is possible that physicians have misconceptions about African Americans’ SDM preferences, particularly given that rates of diabetes self-management may be lower among this population. Cultural and communication barriers may also pose challenges to SDM between African American patients and their physicians.38
And finally, provider bias (conscious or unconscious) may affect physician communication styles and behaviors39
and limit opportunities for shared decision making among African American patients with diabetes.
Although our primary goal was to explore racial differences in SDM preferences and behaviors, it is important to note trends overall. Although the majority of patients in our study wanted to help set discussion agendas, they generally preferred to rely on their doctors’ knowledge about medical diagnoses and leave final decisions about treatment to their physicians. However, there were sizable proportions of patients who felt strongly about having either shared or passive roles. Identifying and empowering those patients who want to play active roles in their care may be an important mechanism for improving health outcomes for such patients, particularly those more likely to have lower health indices at baseline, such as racial/ethnic minorities.
In addition, our findings support existing literature about the associations between increased SDM preferences and behaviors with female gender, younger age (being 65 years old or younger), and higher educational attainment. African American patients in our study were more likely to be female and younger but were less well educated than their white patient peers.
Our study has several limitations. First, we measured patient information-seeking behaviors based on self-report, which may have affected the accuracy of this measure and also be susceptible to recall bias. In addition, we do not have demographic information (e.g., race) about patients who chose not to participate in the study, which makes our findings susceptible to selection bias. Third, because odds ratios may overstate differences when an event is not rare, our findings may overstate the racial differences in information-seeking behaviors. It is also important to note that our data are cross-sectional in nature, and consequently, causal relationships cannot be inferred from our study. Although our findings suggest that patient factors are not significant contributors to disparities in shared decision making, we did not assess nonpatient (i.e., physician) factors. Last, all patients received care in midwestern or west-central states in the United States, and our findings may not be generalizable to patients in other regions.
Nonetheless, our study has several strengths. First, all patients received care at a community health center. Such centers provide a disproportionate amount of care to racial/ethnic minorities and provide the majority of primary care services for medically underserved populations. Consequently, exploring care within such centers is important to understanding health disparities. Second, we were able to adjust for several important sociodemographic factors, patient-provider relationship measures, and clinical factors that may affect patient preferences and patient behaviors related to shared decision making.
In summary, we found that, among diabetes patients receiving care at community health centers, African Americans preferred shared decision making as much as whites and were more likely to report initiating discussions with their doctors about their diabetes care. Our findings are important in light of existing evidence that racial/ethnic minorities in general, including African Americans, have lower quality communication with their physicians and less shared decision making. Such communication disparities may be an important contributor to health disparities, particularly in chronic diseases such as diabetes. More research is needed to better characterize SDM behaviors and potential racial differences that may exist among them, as information-seeking behaviors may be insufficient to ensure full sharing in the decision-making process. In addition, future research should further identify and address patient barriers, particularly physician-based barriers, to shared decision making among African Americans.