HEALTH POLICY CENTER Support for this research was provided by the Robert Wood Johnson Foundation. The views expressed here do not necessarily reflect the views of the Foundation. Perceptions of Discrimination and Unfair Judgment While Seeking Health Care Findings from the September 11–28 Coronavirus Tracking Survey Dulce Gonzalez, Laura Skopec, Marla McDaniel, and Genevieve M. Kenney April 2021 Inequities in health insurance coverage and access to care are well established (Artiga, Orgera, and Pham 2020; CDC 2013; Institute of Medicine 2003; Riley 2012; Shartzer, Long, and Anderson 2015). The mechanisms behind these inequities are complex and include interpersonal experiences of unfair treatment while seeking care, institutional barriers within health systems, and structural barriers in non–health care domains that contribute to socioeconomic disadvantage (Bailey et al. 2017; National Academies of Sciences, Engineering, and Medicine 2017).1 Research shows that people are often discriminated against or treated unfairly in health care settings because of disabilities, gender identity or sexual orientation, and race or ethnicity (Bleich et al. 2019; Mays et al. 2018; Nong et al. 2020; Skopec and Long 2016). These patterns are concerning given that health care disruptions and suboptimal quality that result from unfair treatment can lead people to delay or forgo care, to search for a new provider, and to experience adverse health consequences (Bird and Bogart 2001; Burgess et al. 2008; Mays et al. 2018; Skopec and Long 2016; Stark Casagrande et al. 2007; Trivedi and Ayanian 2006; Van Houtyen et al. 2005). Despite significant evidence of disparities in health care access and outcomes, there are significant knowledge gaps about the role of perceived discrimination and unfair treatment, specifically while seeking care, in contributing to these disparities at the national level (Shavers et al. 2012). Other research institutions have fielded surveys in recent years exploring perceptions of unfair treatment or discrimination in the health care system by race and ethnicity, but these questions are not typically included in federal surveys of health care use and access.2 In this brief, we draw from the most recent wave of the Urban Institute’s Coronavirus Tracking Survey, a nationally representative survey of nonelderly adults conducted between September 11 and September 28, 2020. That survey wave asked respondents whether in the last 12 months they had ever felt a doctor, other health care provider, or their staff judged them unfairly or discriminated against them based on their race/ethnicity, gender, gender identity, sexual orientation, a disability, or a health condition and about the consequences of these experiences.3 Our questions were broad, allowing respondents to select multiple reasons for these perceptions of discrimination or unfair judgment. We focused on perceptions of discrimination by health care providers and their staff, so we do not capture interactions with other actors in the health care system, such as pharmacists or health insurance companies. We explore responses to these questions, compare our results with those of other surveys, and define further areas for exploration (see the Data and Methods section for background information on our survey, analytic approach and limitations, and comparison with other surveys). We found the following: ◼ Roughly 5 percent of all nonelderly adults reported having been discriminated against or judged unfairly by a doctor, other health care provider, or their staff in the previous 12 months for one of the reasons (including race/ethnicity) examined in this study. Black adults (10.6 percent) were more likely than Hispanic/Latinx adults (4.5 percent) and white adults (3.6 percent) to report having experienced this type of discrimination or unfair judgment.4 » Just over half of respondents reporting this type of discrimination or unfair judgment in the past 12 months indicated there were multiple reasons for it. ◼ Race or ethnicity (cited by 3.0 percent of adults) was the most common reason reported for perceived discrimination or unfair judgment by a health care provider or their staff, and 7.9 percent of Black adults reported having experienced this type of discrimination or unfair treatment. ◼ Black women (13.1 percent) and Black adults with low incomes (14.6 percent) reported having experienced discrimination or unfair judgment by a health care provider or their staff in the prior year at particularly high rates. ◼ Although we found less prevalence of discrimination or unfair judgment than comparable surveys owing to factors such as differences in survey wording and question reference period, the disparities in these experiences by race and ethnicity were similar across surveys (see Data and Methods on page 8). This study is part of an ongoing body of work exploring patients’ reported experiences of discrimination and unfair treatment in health care. In addition to documenting prevalence, tackling health inequities stemming from these experiences will require the explicit centering of policies and practices around equity, including provider and office staff training, implementation and monitoring of equity-focused quality measures, and holding payers, providers, and their staff accountable for discriminatory practices and unfair treatment. 2 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKI NG CARE Results As of Urban’s September 2020 survey, 5.1 percent of all nonelderly adults reported having been discriminated against or judged unfairly by a doctor, other health care provider, or their staff in the previous 12 months because of one of the reasons examined in this study. Black adults (10.6 percent) were more likely than Hispanic/Latinx adults (4.5 percent) and white adults (3.6 percent) to report this type of discrimination or unfair judgment. Among adults who reported having experienced any discrimination or unfair judgment by a doctor, other health care provider, or their staff, over half (about 2.6 percent) cited multiple reasons (figure 1). Moreover, Black adults (10.6 percent) reported having experienced this type of discrimination or unfair judgment for any reason at two times the rate of Hispanic/Latinx adults (4.5 percent) and nearly three times the rate of white adults (3.6 percent). About 6.4 percent of Black adults reported discrimination or unfair judgment by a health care provider or their staff for multiple reasons, compared with 2.4 percent of Hispanic/Latinx adults and 1.8 percent of white adults. FIGURE 1 Share of Adults Ages 18 to 64 Reporting Discrimination or Unfair Judgment by a Health Care Provider or Their Staff in the Previous 12 Months, Overall and by Race/Ethnicity, September 2020 Any reason Multiple reasons 10.6% 6.4% 5.1% 4.5%*** 3.6%*** 2.6% 2.4%*** 1.8%*** All adults Black Hispanic/Latinx White URBAN INSTITUTE Source: Urban Institute Coronavirus Tracking Survey, wave 2, conducted September 11–28, 2020. Notes: Estimates are not shown for non–Hispanic/Latinx adults who are not Black or white or identify as more than one race. */**/*** Estimate differs significantly from Black adults at the 0.10/0.05/0.01 level, using two-tailed tests. PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE 3 Race or ethnicity was the most cited reason for discrimination or unfair judgment by a health care provider or their staff in the previous year (3.0 percent of all adults). Other reasons for discrimination or unfair judgment by a health care provider or their staff included gender or gender identity (2.2 percent),5 a health condition (2.1 percent), a disability (1.4 percent), and sexual orientation (0.9 percent) (table 1). Black adults were more likely than Hispanic/Latinx and white adults to report having experienced discrimination or unfair judgment by a health care provider or their staff because of race or ethnicity (7.9 percent versus 3.8 percent and 1.1 percent, respectively). Black adults were also more likely than Hispanic/Latinx and white adults to cite a health condition (5.7 percent versus 1.3 percent and 1.6 percent), a disability (3.2 percent versus 0.7 percent and 1.3 percent), and sexual orientation (2.7 percent versus 0.4 percent and 0.7 percent) as reasons for the discrimination and unfair judgment reported. Hispanic/Latinx adults were about as likely as white adults to report discrimination or unfair judgment by a health care provider or their staff for all reasons examined except for race or ethnicity (3.8 percent for Hispanic/Latinx and 1.1 percent for white adults). TABLE 1 Share of Adults Ages 18 to 64 Reporting Discrimination or Unfair Judgment by a Health Care Provider or Their Staff for Select Reasons in the Previous 12 Months, by Race/Ethnicity, September 2020 All adults Black Hispanic/Latinx White Reason Race or ethnicity 3.0% 7.9% 3.8%***^^^ 1.1%*** Health condition 2.1% 5.7% 1.3%*** 1.6%*** Gender or gender identity 2.2% 3.7% 2.0% 2.0%** Disability 1.4% 3.2% 0.7%*** 1.3%** Sexual orientation 0.9% 2.7% 0.4%*** 0.7%** Sample size 4,007 720 1,036 1,994 Source: Urban Institute Coronavirus Tracking Survey, wave 2, conducted September 11–28, 2020. Notes: Estimates are not shown for non–Hispanic/Latinx adults who are not Black or white or who identify as more than one race. */**/*** Estimate differs significantly from Black adults at the 0.10/0.05/0.01 level, using two-tailed tests. ^/^^/^^^ Estimate differs significantly from white adults at the 0.10/0.05/0.01 level, using two-tailed tests. Black women and Black adults with low incomes reported having experienced discrimination or unfair judgment by a health care provider or their staff at particularly high rates.6 Women (6.4 percent) were more likely than men (3.8 percent) to report having experienced discrimination or unfair judgment by a health care provider or their staff in the prior year for any reason (data not shown). These differences were particularly large for Black women (figure 2). One in eight (13.1 percent) Black women reported unfair judgment or discrimination by a health care provider or their staff in the past 12 months. This share was over twice as large as that for Hispanic/Latinx women (4.5 percent), white women (5.2 percent), and Hispanic/Latinx men (4.5 percent). Black women also reported having experienced this type of discrimination or unfair judgment at a higher rate than Black 4 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKI NG CARE men (7.0 percent). Non-Hispanic white men were the least likely group to report such experiences (at 2.2 percent). FIGURE 2 Share of Adults Ages 18 to 64 Reporting Any Discrimination or Unfair Judgment by a Health Care Provider or Their Staff in the Previous 12 Months, by Race/Ethnicity and Gender, September 2020 13.1% 7.0%**/^^ 5.2%***/^^^ 4.5%*** 4.5%***/^^ 2.2%*** Black women Black men Hispanic/Latinx Hispanic/Latinx White women White men women men URBAN INSTITUTE Source: Urban Institute Coronavirus Tracking Survey, wave 2, conducted September 11–28, 2020. Notes: */**/*** Estimate differs significantly from Black women at the 0.10/0.05/0.01 level, using two-tailed tests. ^/^^/^^^ Estimate differs significantly from white men at the 0.10/0.05/0.01 level, using two-tailed tests. Discrimination or unfair judgment by a health care provider or their staff were more frequently reported by adults with family incomes at or below 250 percent of the federal poverty level (8.3 percent compared to 2.6 percent for higher-income adults; data not shown). Black adults with low incomes were most likely to report experiencing this type of unfair judgment or discrimination in the prior year for any reason (14.6 percent), a share higher than that for Hispanic/Latinx adults with low incomes (6.1 percent) and white adults with low incomes (6.2 percent; figure 3). Among higher-income adults, Black adults were the most likely to report having experienced discrimination or unfair judgment by a health care provider or their staff at a share of 5.6 percent, followed by white adults (2.2 percent) and Hispanic/Latinx adults (1.1 percent). PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE 5 FIGURE 3 Share of Adults Ages 18 to 64 Reporting Any Discrimination or Unfair Judgment by a Health Care Provider or Their Staff in the Previous 12 Months, by Race/Ethnicity and Family Income, September 2020 14.6% 6.1%***/^^^ 6.2%***/^^^ 5.6%***/^^ 2.2%*** 1.1%***/^ Black, low-income Hispanic/Latinx, White, low-income Black, higher Hispanic/Latinx, White, higher low-income income higher income income URBAN INSTITUTE Source: Urban Institute Coronavirus Tracking Survey, wave 2, conducted September 11–28, 2020. Notes: Low-income adults have family incomes below 250 percent of the federal poverty level. Higher-income adults have family incomes at or above 250 percent of the federal poverty level. */**/*** Estimate differs significantly from Black adults with low family incomes at the 0.10/0.05/0.01 level, using two-tailed tests. ^/^^/^^^ Estimate differs significantly from white adults with higher family incomes at the 0.10/0.05/0.01 level, using two-tailed tests. Discussion We found that Black adults, particularly Black adults with low incomes and Black women, were more likely than white adults and Hispanic/Latinx adults to report having been discriminated against or judged unfairly by a health care provider or their staff in the previous 12 months, a period that overlapped with the COVID-19 pandemic and during which fewer people sought or were able to get health care (Gonzalez et al. 2021; Mehrotra et al. 2020).7 Our finding that Black adults were more likely than white adults to report that they had experienced discrimination or to feel that they had been unfairly judged by a health care provider or their staff is consistent with findings from other surveys.8 These experiences can have severe consequences (including delayed or forgone care) and can also impose other types of costs (e.g., stress and worry, time spent filing complaints or searching for a new provider) that have cumulative adverse effects on people’s lives. Moreover, among adults who reported 6 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKI NG CARE having experienced discrimination or unfair judgment, many reported having experienced a negative health consequence (e.g., forgoing care or not following a provider’s recommendations) or having taken action (e.g., filing a complaint or speaking to a provider about the discrimination or unfair judgment) in response to their experience, though we do not present estimates in this brief because of sample size restrictions. Given that this pattern is well documented, the imperative is to identify and implement needed changes in policy and practice that will eliminate the systematically worse treatment that Black patients and other people who frequently experience discrimination receive. Immediate steps include educating and training providers and other health care staff to acknowledge and recognize racism and the implicit, unconscious, and explicit biases ingrained in the health care system (including how such biases harm patients); acknowledging other forms of discrimination on the basis of gender identity, language spoken, or health insurance coverage; implementing practices to disrupt these patterns to ensure that health care providers and their staff provide consistent, evidence-based, and culturally effective care; and holding providers, their staff, and health care education institutions accountable for racist and other discriminatory policies and practices (Hostetter and Klein 2018; Taylor 2019; Taylor and Weersasinghe 2020; Williams and Cooper 2019). Through contracting processes, benefit-design choices, data- collection requirements that include disaggregation for key subgroups, and reimbursement policies (e.g., attaching incentives and penalties to health equity goals, reimbursing services provided by doulas and community health care workers to better align with community needs), payers have a critical role to play in holding providers and their staff accountable (Bazinsky and Bailit 2019; Hostetter and Klein 2018; Taylor 2019; Taylor and Weersasinghe 2020; Williams and Cooper 2019). Reducing inequities in the health care system will also likely require diversifying the racial, economic, linguistic, and educational backgrounds of physicians and other health professionals so that they more closely resemble the communities they serve. Policies that would make the health care workforce more diverse and culturally competent include expanding and targeting scholarship and loan prepayment programs for medical school, expanding training opportunities in other health professions for underrepresented communities, and providing mentoring and tutoring programs to support a pipeline into these programs (Brooks-LaSure et al. 2020; Taylor and Weerasinghe 2020; Williams and Cooper 2019). Intentional implementation of antiracist medical school programming will also be key. Moreover, health policy and health services researchers should prioritize building the evidence base on what public and private investments and interventions reduce unequal treatment and contribute to equitable outcomes in the health sector. This brief is part of a continuing body of work on patient perceptions and experiences of unfair treatment, judgment, and discrimination in health care. In ongoing work, we are exploring Black adults’ reported experiences of being discriminated against or judged unfairly while seeking health care (including specific examples, circumstances, and consequences) through in-depth follow-up phone interviews with respondents to the September 2020 tracking survey. These interviews are also addressing whether respondents perceive discrimination and unfair judgment to be distinct concepts. In PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE 7 future work, we will also examine reporting of experiences with discrimination in other settings such as when interacting with law enforcement or when applying for safety net programs. Our survey asked about individual experiences with health care providers and their staff but cannot address structural or institutional barriers, such as unequal allocation of resources across communities or lack of health insurance coverage, that can lead to discrimination and disparate outcomes. Discrimination in health care has severe short- and long-term negative consequences for patients (Bird and Bogart 2001; Bleich et al. 2019; Burgess et al. 2008; Mays et al. 2018; Skopec and Long 2016; Stark et al. 2007; Trivedi et al. 2006; Van Houtyen et al. 2005). To fully ameliorate racial and ethnic inequities in health outcomes, policymakers and the health care system will need to confront and address the full range of discrimination and unfair judgment that patients report experiencing when seeking health care. Data and Methods This brief uses data from the second wave of the Urban Institute’s Coronavirus Tracking Survey, a nationally representative internet-based survey of nonelderly adults designed to assess how the COVID-19 pandemic is affecting adults and their families and how those effects change over time. A total of 4,007 adults ages 18 to 64 participated in the second wave, which was fielded September 11– 28, 2020; 91 percent of respondents completed the survey between September 11 and 17. The first wave of the tracking survey was fielded May 14–27. Respondents for both waves were sampled from the 9,032 adults who participated in the most recent round of the Health Reform Monitoring Survey (HRMS), which was fielded March 25 through April 10, 2020. The HRMS sample is drawn from Ipsos’s KnowledgePanel, the nation’s largest probability-based online panel. The panel is recruited from an address-based sampling frame covering 97 percent of US households and includes households with and without internet access. Participants can take the survey in English or Spanish. The Coronavirus Tracking Survey includes an oversample of Black and Hispanic/Latinx HRMS participants. Survey weights adjust for unequal selection probabilities and are poststratified to the characteristics of the national nonelderly adult population based on benchmarks from the Current Population Survey and American Community Survey. We also adjust the September tracking survey weights to address differential nonresponse among participants in the March/April HRMS. Because nonresponse in the September survey is greater among HRMS participants experiencing negative employment effects and material hardship during the pandemic and these effects differ based on demographic characteristics, we adjust the weights so that work status and employment and hardship outcomes reported in March/April among the September sample are consistent with the outcomes reported among the full March/April HRMS sample both overall and within key demographic subgroups. These adjustments make the September tracking survey sample more representative of the sample initially drawn in March/April and mitigate nonresponse bias in estimated changes over time in the pandemic’s effects. The margin of sampling error, including the design effect, for the full sample of adults in the second wave of the tracking survey is plus or minus 2.0 percentage points for a 50 percent statistic at the 95 8 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKI NG CARE percent confidence level. Additional information about the March/April 2020 HRMS and the questionnaires for the HRMS and first and second waves of the Coronavirus Tracking Survey can be found at hrms.urban.org. Analytic Approach Respondents in the September 2020 round were asked whether, in the last 12 months, they had ever felt that a doctor, other health care provider, or their staff judged them unfairly or discriminated against them because of their race, ethnicity, gender, gender identity, sexual orientation, disability, or health condition. Respondents could select multiple reasons for having been discriminated against or judged unfairly. We estimated the share of adults who reported discrimination or unfair judgment overall and for each of the provided reasons. We also estimated the share of adults who experienced discrimination or unfair judgment regardless of stated reason by race and ethnicity (non-Hispanic Black, non-Hispanic white, and Hispanic/Latinx), family income (above and below 250 percent of the federal poverty level), and gender (male or female). Limitations This study has several limitations. First, respondents were asked about their health care experiences in the previous 12 months. Because of the coronavirus pandemic, respondents may have been more likely to avoid health care or to have received care by telephone or video during that period than they would have during a prepandemic period. With fewer in-person contacts with the health care system, we would expect the reported prevalence of discrimination or unfair judgment to be lower. Second, respondents were asked about discrimination or unfair judgment they had experienced from providers and their staff, whereas other surveys ask about unfair treatment or discrimination in health care settings more generally. Respondents may be less likely to indicate that a person discriminated against them than that a system (e.g., a hospital) discriminated against them. In addition, our questions may not encompass health care encounters like filling prescriptions at pharmacies. We did not provide respondents a definition of race or ethnicity before the questions about discrimination and unfair judgment, and respondents may not define race or ethnicity as we do (that is, respondents may use the terms race and ethnicity interchangeably). In addition, interpretations of unfair judgment and discrimination are subjective, and respondents may not have been aware that they had been exposed to discrimination or unfair treatment or may interpret unintentionally discriminatory actions that may be a universal practice, such as short physician interactions, as discriminatory to them personally. Through in-depth follow-up interviews, we plan to explore the experiences that led respondents to report having been discriminated against or judged unfairly, and the experiences of those respondents who did not report such treatment. PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE 9 Comparison with Other Surveys We also compared our results with those of other surveys conducted in 2020 that explored patients’ perceptions of discriminatory or unfair treatment while seeking care (table 2). Importantly, these other surveys differed from the Coronavirus Tracking Survey in wording of questions, target population, survey mode, reference period, and sample size. TABLE 2 Comparison of Survey Questions about Patient Perceptions of Unfair Treatment, Unfair Judgment, or Discrimination While Seeking Care Fielded in 2020 The Commonwealth KFF/The Undefeated Urban Institute Fund and Harvard T. September 2020 Pew Research Center Coronavirus Tracking Chan School of Public Survey on Race and KFF June 2020 Health June 2020 American Survey Health Health Tracking Poll Trends Panel Survey question In the last 12 months, During the past 12 Was there a time in the Can you think of any Here are a few things that have you ever felt that a months, do you believe last twelve months occasion in the last some people in the U.S. doctor, other health care that (you/anyone living when you felt you were twelve months when may have experienced provider, or their staff in your household) ever treated unfairly in the you felt you were because of their race or judged you unfairly or experienced following places treated unfairly in the ethnicity and others may discriminated against discrimination when because of your racial following places because not have. Please indicate you because of any of the going to a doctor or or of your racial or ethnic whether or not each has following? health clinic? ethnic background? background? happened to you because of your race or ethnicity: a) Your race While getting health While getting health b) Your ethnicity care for yourself care for yourself or a Been treated unfairly c) Your gender or a family member? family member? when seeking medical d) Your sexual treatment. orientation e) Your gender identity f) A disability g) A health condition Reference 12 months 12 months 12 months 12 months Ever period Target Adults ages 18 to 64 Adults age 18 and older Adults ages 18 and Adults ages 18 and older Adults ages 18 and older population older 10 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE The Commonwealth KFF/The Undefeated Urban Institute Fund and Harvard T. September 2020 Pew Research Center Coronavirus Tracking Chan School of Public Survey on Race and KFF June 2020 Health June 2020 American Survey Health Health Tracking Poll Trends Panel Survey mode Self-administered, Telephone Hybrid, telephone and Telephone Self-administered, probability-based web probability-based web probability-based web Field dates September 11–28, 2020 November 5–December August 20–September June 8–14, 2020 June 4–10, 2020 5 2020 14, 2020 Sample size 4,007 2,150 1,769 1,296 9,654 ◼ All adults: 5% ◼ Black adults: 19% ◼ All adults: 10% ◼ All adults: 8% ◼ All adults: 11% Share reporting ◼ Black: 11% ◼ Hispanic/Latinx: 12% ◼ Black: 20% ◼ Black: 17% ◼ Black: 31% unfair ◼ Hispanic/Latinx: 5% ◼ Hispanic/Latinx: ◼ Hispanic/Latinx: 14% ◼ Hispanic/Latinx: 18% treatment, ◼ White: 4% 19% ◼ White: 5% ◼ White: 5% judgment, or ◼ White: 5% discrimination in health care Sources: Urban Institute Coronavirus Tracking Survey, wave 2, conducted September 11–28, 2020; “Pew Research Center’s American Trends Panel”, Pew Research Centers, accessed March 11, 2021, https://www.pewsocialtrends.org/wp-content/uploads/sites/3/2020/06/PSDT_06.12.20_protest.report- TOPLINE.pdf?utm_source=link_newsv9&utm_campaign=item_312590&utm_medium=copy; “KFF Health Tracking Poll–June 2020,” Kaiser Family Foundation June 26, 2020, http://files.kff.org/attachment/Topline-KFF-Health-Tracking-Poll-June-2020.pdf; “KFF/The Undefeated Survey on Race and Health,” KFF and The Undefeated, September 2020, http://files.kff.org/attachment/TOPLINE-KFF-The-Undefeated-Survey-on-Race-and-Health.pdf. Notes: KFF = Kaiser Family Foundation. In the KFF and Pew surveys, respondents saw questions about unfair treatment in health care as part of a series of settings (for example, other settings or situations included being unfairly stopped by police or at a store while shopping). The Commonwealth Fund/Harvard survey question on discrimination in health care was only asked of respondents who reported they or someone in their household received health care in the past 12 months. PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE 11 Using Urban’s September 2020 Coronavirus Tracking Survey, we found a lower prevalence of perceptions of discrimination or unfair judgment in health care than other 2020 surveys. The most comparable survey, the Kaiser Family Foundation/The Undefeated September 2020 Survey on Health and Race, found that 10 percent of respondents or their family members had been treated unfairly because of their race or ethnicity while seeking health care in the previous 12 months, including 20 percent of Black respondents. The Kaiser Family Foundation (KFF) June 2020 Health Tracking Poll found similar results (8 percent of all adults reported having been treated unfairly because of their race or ethnicity, including 17 percent of Black adults). Although the prevalence of unfair treatment was higher in these surveys, the gap between Black and white adults was similar. In contrast, the Pew Research Center June 2020 American Trends Panel, which has a lifetime reference period, found that 11 percent of respondents had ever been treated unfairly because of their race or ethnicity when seeking medical care, including 31 percent of Black respondents. Estimates were less consistent across surveys for Hispanic/Latinx respondents (see table 1). Urban’s Coronavirus Tracking Survey found that 5 percent of Hispanic/Latinx respondents reported unfair judgment or discrimination by a health care provider or their staff, compared with 4 percent of non–Hispanic/Latinx white respondents. In contrast, the KFF/The Undefeated September 2020 survey found that 19 percent of Hispanic/Latinx adults reported having experienced unfair treatment while seeking care because of race or ethnicity, compared with 5 percent of non-Hispanic/Latinx white respondents. Similarly, the KFF June 2020 Health Tracking Poll found that 14 percent of Hispanic/Latinx respondents or their family members had experienced unfair treatment while seeking care because of their race and ethnicity, compared with 5 percent of non–Hispanic/Latinx white respondents. The Pew Research Center June 2020 American Trends Panel found similar results (18 percent of Hispanic/Latinx respondents reported this type of unfair treatment, compared with 5 percent of non–Hispanic/Latinx white respondents). And, the Commonwealth Fund/Harvard survey found 19 percent of Black adults who had a health care visit in the past year reported discrimination while seeking care, compared with 12 percent of Hispanic/Latinx adults. Several factors may explain the differences between our results and those of other 2020 surveys. For one, the Pew Research Center survey has a lifetime reference period, which is more likely to capture a greater prevalence of unfair treatment than a more restricted 12-month reference period. Further, the KFF, Pew Research Center, and Commonwealth Fund/Harvard surveys all surveyed adults 18 and older, whereas Urban’s survey only surveyed nonelderly adults (ages 18 to 64). The context for the survey questions also differed. The KFF surveys and the Pew Research Center survey asked about unfair treatment while seeking care because of race and ethnicity in the context of a broader survey including questions about the George Floyd protests and opinions about racial discrimination in the United States. In contrast, questions about perceptions of discrimination and unfair judgment by health care providers or their staff included in our survey were surrounded by unrelated questions about the experiences of individuals and families during the COVID-19 pandemic. The Coronavirus Tracking Survey also did not define ethnicity for respondents before the series of 12 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE questions on experiences of discrimination and unfair judgment, which may have led to underreporting on this measure for Hispanic/Latinx adults. Additionally, the approach of the relevant questions differed. The June 2020 KFF and Pew Research Center surveys asked about unfair treatment in the health care system because of race and ethnicity, whereas the Coronavirus Tracking Survey asked about unfair judgment or discrimination by providers or their staff for multiple reasons and allowed respondents to select all that applied. The Commonwealth Fund/Harvard survey did not ask whether the discrimination experienced while seeking care was because of race or ethnicity. The reasons for unfair judgment and discrimination by health care providers or their staff in our survey were also broader, requiring respondents to identify the reason for the discrimination or unfair judgment rather than offering an open yes/no question may have affected responses. In addition, the Coronavirus Tracking Survey question was narrower, focusing on health care providers and staff rather than all types of health care system interactions. Lastly, the Coronavirus Tracking Survey only focused on experiences of discrimination and unfair treatment for the respondent, whereas the KFF, Pew Research Center, and Commonwealth Fund/Harvard surveys also asked about family or household experiences. Overall, more research is needed to determine whether respondents view discrimination, unfair treatment, and unfair judgment as interchangeable. In addition, it remains unclear where poor treatment is most likely to occur, and whether those locations are captured in each of the survey questions we examined. For example, unfair judgment when filling a prescription may not be captured by the Coronavirus Tracking Survey, whereas the broader wording of the Kaiser Family Foundation and Pew surveys may prompt respondents to include such experiences. Notes 1 Brigette A. Davis, “Discrimination: A Social Determinant of Health Inequities,” Health Affairs (blog), February 25, 2020, https://www.healthaffairs.org/do/10.1377/hblog20200220.518458/full/. 2 “2020 Pew Research Center’s American Trends Panel,” Pew Research Center, accessed March 11, 2021, https://www.pewsocialtrends.org/wp-content/uploads/sites/3/2020/06/PSDT_06.12.20_protest.report- TOPLINE.pdf?utm_source=link_newsv9&utm_campaign=item_312590&utm_medium=copy; Liz Hamel, Audrey Kearney, Ashley Kirzinger, Lunna Lopes, Cailey Muñana, and Mollyanne Brodie, “KFF Health Tracking Poll–June 2020,” Kaiser Family Foundation, June 26, 2020, http://files.kff.org/attachment/Topline-KFF-Health-Tracking- Poll-June-2020.pdf; Liz Hamel, Lunna Lopes, Cailey Muñana, Samantha Artiga, and Mollyanne Brodie, “KFF/The Undefeated Survey on Race and Health,” Kaiser Family Foundation, October 13, 2020, https://www.kff.org/report-section/kff-the-undefeated-survey-on-race-and-health-main-findings/; “Poll finds at least half of Black Americans say they have experienced racial discrimination in their jobs and from the police,” Harvard T. H. Chan School of Public Health, October 24, 2017, https://www.hsph.harvard.edu/news/press- releases/black-americans-discrimination-work-police/. 3 The reference period for the survey questions on discrimination and unfair judgment in health care overlaps with the pandemic, during which many patients did not seek care and providers curbed services to prevent exposure to the coronavirus. We asked respondents about the consequences of their experiences, including whether they delayed or did not get needed care, did not follow medical advice, sought a new provider, or filed a complaint. Because of sample size restrictions, we do not present estimates for these outcomes, but forthcoming work will explore them. PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE 13 4 We use “Hispanic/Latinx” to reflect the different ways in which people self-identify. The US Census Bureau uses the term “Hispanic.” The terms “white” and “Black” refer to adults who do not identify as Hispanic or Latinx. 5 We asked respondents separately whether they were discriminated against or judged unfairly because of gender or gender identity. We opted to combine responses into one measure (i.e., gender or gender identity) for simplicity. 6 Respondents with multiple structurally disadvantaged identities or conditions may not be able to identify the specific reason they were judged unfairly or discriminated against, or they may have felt they received negative treatment for multiple reasons. Because we cannot distinguish between these two possibilities, the remainder of our results focus on respondents who reported discrimination or unfair judgment for any reason. 7 Cynthia Cox and Krutika Amin, “How have health spending and utilization changed during the coronavirus pandemic?” Peterson Center on Healthcare and Kaiser Family Foundation, December 1, 2020, https://www.healthsystemtracker.org/chart-collection/how-have-healthcare-utilization-and-spending- changed-so-far-during-the-coronavirus-pandemic/#item-start. 8 See endnote 2. References Artiga, Samantha, Kendal Orgera, and Olivia Pham. 2020. “Disparities in Health and Health Care: Five Key Questions and Answers.” San Francisco: Kaiser Family Foundation. Bailey, Zinzi D., Nancy Krieger, Madina Agénor, Jasmine Graves, Natalia Linos, and Mary T. Bassett. 2017. “Structural Racism and Health Inequities in the USA: Evidence and Interventions.” The Lancet 389 (10077): 1,453–463. https://doi.org/10.1016/S0140-6736(17)30569-X. Bazinsky, Kate Reinhalter, and Michael Bailit. 2019. “How States Can Use Measurement as a Foundation for Tackling Health Disparities in Medicaid Managed Care.” N.p.: State Health and Value Strategies. Bird S. T., and Laura M. Bogart. 2001. “Perceived Race-Based and Socioeconomic Status (SES)-Based Discrimination in Interactions with Health Care Providers.” Ethnicity & Disease 11 (3): 554–63. Bleich, Sara N., Mary G. Findling, Logan S. Casey, Robert J. Blendon, John M. Benson, Gillian K. SteelFisher, Justin M. Sayde, and Carolyn Miller. 2019. “Discrimination in the United States: Experiences of Black Americans.” Health Services Research 54 (S2): 1,367–471. https://doi.org/10.1111/1475-6773.13220. Brooks-LaSure, Patti Boozang, Kaylee O’Connor, and Alisha Reginal. 2020. “State Strategies for Overcoming Barriers to Advance Health Equity.” N.p.: State Health and Value Strategies. Burgess Diana J., Yingmei Ding, Margaret Hargreaves, Michelle van Ryn, and Sean Phelan. 2008. “The Association between Perceived Discrimination and Underutilization of Needed Medical and Mental Health Care in a Multi- Ethnic Community Sample.” Journal of Health Care for the Poor and Underserved 19 (3): 894–911. http://dx.doi.org/10.1353/hpu.0.0063. CDC (Centers for Disease Control and Prevention). 2013. “CDC Health Disparities and Inequalities Report—United States, 2013.”Atlanta: US Department of Health and Human Services, Centers for Disease Control and Prevention. Gonzalez, Dulce, Michael Karpman, Genevieve M. Kenney, and Stephen Zuckerman. 2021. “Delayed and Forgone Health Care for Nonelderly Adults during the COVID-19 Pandemic: Findings from the September 11–28 Coronavirus Tracking Survey.” Washington, DC: Urban Institute. Hostetter, Martha, and Sarah Klein. 2018. “In Focus: Reducing Racial Disparities in Health Care by Confronting Racism.” New York: Commonwealth Fund. Institute of Medicine. 2003. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. Washington, DC: The National Academies Press. 14 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE Mays, Vickie M., Audrey Jones, Ayesha Delany-Brumsey, Courtney Coles, and Susan D. Cochran. 2018. “Perceived Discrimination in Healthcare and Mental Health/Substance Abuse Treatment Among Blacks, Latinos, and Whites.” Medical Care 55 (2): 173–81. https://dx.doi.org/10.1097%2FMLR.0000000000000638. Mehrotra, Ateev, Michael Chernow, David Linetsky, Hilary Hatch, and David Cutler. 2020. “The Impact of the COVID-19 Pandemic on Outpatient Visits: A Rebound Emerges.” New York: Commonwealth Fund. National Academies of Sciences, Engineering, and Medicine. 2017. Communities in Action: Pathways to Health Equity. Washington, DC: The National Academies Press. doi: 10.17226/24624. Riley, Wayne J. 2012. “Health Disparities: Gaps in Access, Quality and Affordability of Medical Care.” Transactions of the American Clinical and Climatological Association 123: 167–74. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3540621/. Stark Casagrande, Sarah, Tiffany L. Gary, Thomas A. LaVeist, Darrell J. Gaskin, and Lisa A. Cooper. 2007. “Perceived Discrimination and Adherence to Medical Care in a Racially Integrated Community.” Journal of General Internal Medicine 22: 389–95. https://link.springer.com/article/10.1007/s11606-006-0057-4. Shartzer, Adele, Sharon K. Long, and Nathaniel Anderson. 2015. “Access to Care and Affordability Have Improved Following Affordable Care Act Implementation; Problems Remain.” Health Affairs 35 (1): 161–68. https://doi.org/10.1377/hlthaff.2015.0755. Shavers, Vickie L., Pebbles Fagan, Dionne Jones, William M. P. Klein, Josephine Boyington, Carmen Moten, and Edward Rorie. 2012. “The State of Research on Racial/Ethnic Discrimination in The Receipt of Health Care.” American Journal of Public Health 102 (5): 953–66. https://doi.org/10.2105/AJPH.2012.300773. Skopec, Laura, and Sharon Long. 2016. “Poor Treatment by Health Care Providers and Staff Is More Common among Vulnerable Populations.” Washington, DC: Urban Institute. Nong, Paige, Minakshi Raj, Melissa Creary, Sharon L. R. Kardia, and Jodyn E. Platt. 2020. “Patient-Reported Experiences of Discrimination in the US Health Care System.” JAMA Network Open 3 (12): e2029650. doi:10.1001/jamanetworkopen.2020.29650. Taylor, Jamila. 2019. Racism, Inequality, and Health Care for African Americans. New York: The Century Foundation. Taylor, Kimá, and Isha Weerasinghe. 2020. Advancing Equity in Maternal Mental Health: Strategies for State Medicaid Programs. Washington, DC: Center for Law and Social Policy. Trivedi Amal N., and John Z. Ayanian. “Perceived Discrimination and Use of Preventive Health Services.” Journal of General Internal Medicine 21 (6): 553–58. http://dx.doi.org/10.1111/j.1525-1497.2006.00413.x. Van Houtven Courtney Harold, Corrine I. Voils, Eugene Z. Oddone, Kevin P. Weinfurt, Joelle Y. Friedman, Kevin A. Schulman, and Hayden B. Bosworth. 2005. “Perceived Discrimination and Reported Delay of Pharmacy Prescriptions and Medical Tests.” Journal of General Internal Medicine 20 (7): 578–583. http://dx.doi.org/10.1007/s11606-005-0104-6. Williams, David R., and Lisa A. Cooper. 2019. “Reducing Racial Inequities in Health: Using What We Already Know to Take Action.” International Journal of Environmental Research and Public Health 16 (4): 606. https://dx.doi.org/10.3390%2Fijerph16040606. About the Authors Dulce Gonzalez is a research associate in the Health Policy Center at the Urban Institute. She forms part of a team working on the Urban Institute’s Well-Being and Basic Needs Survey. Gonzalez conducts quantitative and qualitative research focused primarily on the social safety net, immigration, and barriers to health care access. Her work has also focused on the impacts of the COVID-19 pandemic on nonelderly adults and their families. Before joining Urban, Gonzalez worked at the Georgetown University Center for Children and Families and at the nonprofit organization Maternal and Child PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE 15 Health Access. Gonzalez holds a BA in economics from California State University, Long Beach, and a master’s degree in public policy from Georgetown University. Laura Skopec is a senior research associate in the Health Policy Center, where her research focuses on health insurance coverage, health care access, and health care affordability, with a particular focus on the effects of the Affordable Care Act. Before joining Urban, she worked on Affordable Care Act implementation at the Office of the Assistant Secretary for Planning and Evaluation in the US Department of Health and Human Services, and on transparency in health insurance and health care at the American Cancer Society Cancer Action Network. Skopec holds a BS in biopsychology and cognitive science from the University of Michigan and an MS in public policy and management from Carnegie Mellon University. Marla McDaniel is a senior fellow in the Urban Institute’s Center on Labor, Human Services, and Population whose research examines racial and ethnic disparities; low-income children, youth, and families; and the programs and policy environments that touch families’ lives. She is interested in the relationships between inequities across multiple domains—including health, education, and employment—and their compounding effects on overall health and well-being. McDaniel holds a BA in psychology from Swarthmore College and a PhD in human development and social policy from Northwestern University. Genevieve M. Kenney is a senior fellow and vice president of the Health Policy Center. She has been conducting policy research for over 25 years and is a nationally renowned expert on Medicaid, CHIP, and broader health insurance coverage, health care, and health issues facing low-income children and families. Kenney has led a number of Medicaid and CHIP evaluations and published over 100 peer- reviewed journal articles and scores of briefs on insurance coverage, access to care, and related outcomes for low-income children, pregnant women, and other adults. In her current research, she is examining impacts of the Affordable Care Act, implications of the COVID-19 pandemic, and health and health care equity. She received a master’s degree in statistics and a PhD in economics from the University of Michigan. 16 PERCE PTIONS OF DISC RIMINATION AND UNFAIR JUDGMENT WHILE SEEKING CARE Acknowledgments This brief was funded by the Robert Wood Johnson Foundation. The views expressed here do not necessarily reflect the views of the Foundation. The views expressed are those of the authors and should not be attributed to the Urban Institute, its trustees, or its funders. Funders do not determine research findings or the insights and recommendations of Urban experts. Further information on the Urban Institute’s funding principles is available at urban.org/fundingprinciples. This brief benefited from feedback from Katherine Hempstead, Michael Karpman, Margaret Simms, and Kimá Taylor, as well as from the comments, suggestions and questions that resulted from discussions with members of a community advisory board organized and overseen by Myriam Hernandez Jennings of Community Catalyst and Kimá Taylor of the Urban Institute. The authors also thank Zach VeShancey for his careful editorial assistance. ABOUT THE URBAN INSTITUTE The nonprofit Urban Institute is a leading research organization dedicated to developing evidence-based insights that improve people’s lives and strengthen communities. For 50 years, Urban has been the trusted source for rigorous analysis of complex social and economic issues; strategic advice to policymakers, philanthropists, and practitioners; and new, promising ideas that expand opportunities for all. Our work inspires effective decisions that advance fairness and 500 L’Enfant Plaza SW enhance the well-being of people and places. 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