In Their Own Words: Black Californians on Racism and Health Care JANUARY 2022 AUTHOR Linda Cummings, PhD Contents About the Author 3 Executive Summary This report was written by Linda Cummings, 5 Listening to Black Californians PhD, health services research consultant. About the Study Research was designed, conducted, and analyzed by EVITARUS, a Black-owned About the Participants public opinion research firm in Los Angeles. 6 In Their Own Words The interviews were conducted by a cohort Respondents Held a Holistic View of Health and Prioritized of interviewers, led by Shakari Byerly, It in Their Everyday Lives Managing Partner. Experiences of Racism in Health Care Were Widespread and Negatively Impacted Participants' Health About the Foundation Participants Envisioned High-Quality Health Care as The California Health Care Foundation Patient-Centered and Proactive is dedicated to advancing meaningful, measurable improvements in the way the 30 Conclusion health care delivery system provides care to 31 Appendices the people of California, particularly those A. Methodology with low incomes and those whose needs are not well served by the status quo. We B. Regions and Included Cities/Communities work to ensure that people have access to the care they need, when they need it, at a price they can afford. CHCF informs policymakers and industry leaders, invests in ideas and innovations, and connects with changemakers to create a more responsive, patient-centered health care system. DESIGN BY DANA KAY HERRICK Executive Summary C alifornia, home to the most culturally diverse population in the country and the fifth- largest Black population of any state, has a major This report describes the results of Phase I of the Listening to Black Californians study, which was con- ducted during the summer of 2021. The 100 people opportunity to be a leader in health equity. But glar- interviewed for this phase explained how they think ing racial and ethnic inequities pervade its health about health and described their individual expe- care system, from insufficient access to worse health riences with California's health care system. While outcomes to excess mortality. Black residents have each interview provided unique insights, taken the shortest life expectancy (75 years) at birth of together, the conversations revealed many similari- any racial/ethnic group, six years shorter than the ties in how Black Californians view health and how state average. Black Californians have the highest they experience health care. Interviewees shared death rates from breast, cervical, colorectal, lung, their perceptions about health, their experiences and prostate cancers. Black birthing people experi- with racism and health care, and their perspectives ence the highest rates of prenatal and postpartum on what constitutes quality health care. The study depression, preterm births, low birthweight births, results are summarized on the following page. and pregnancy-related mortality. And Black infants have the highest mortality rates.1 As part of its commitment to ending health inequi- About Listening to Black Californians ties, CHCF is funding Listening to Black Californians, PHASE I. Individual, hour-long interviews with a three-phase qualitative and quantitative study to 100 Black Californians conducted from June to understand the health and health care experiences August 2021 to understand their views on health of Black Californians. This project will also explore and well-being, their perceptions of discrimination the impact of racism on Black Californians' expe- and bias in the health care system, and their views riences in the health care system, as well as the on what a quality health care system looks like. detrimental effects of racism on their health. PHASE II. A series of 18 focus groups segmented by gender identity, sexual orientation, age, region, EVITARUS, a Black-owned public opinion research and health insurance status. Discussions focused firm in Los Angeles, is conducting the research. on structural issues in the health care system. An advisory group composed of academics, poli- PHASE III. A statewide survey of 3,000 Black cymakers, providers, and community advocates is Californians to assess the extent to which the guiding the study. Listening to Black Californians Phases I and II findings are represented among will identify policy actions and practice changes at the general Black Californian population. Report the clinical, administrative, and training levels that expected in summer 2022. policymakers and health system leaders can take www.chcf.org/program/listening-to-black- to eliminate discrimination in health care and to californians improve the health outcomes of Black Californians. 2021 Edition – Health Disparities by Race and Ethnicity in California: Pattern of Inequity, California Health Care Foundation, 1. October 2021. In Their Own Words: Black Californians on Racism and Health Care 3 Respondents held a holistic view of health and Participants envisioned high-quality health care prioritized it in their everyday lives. as patient-centered and proactive. $ Respondents viewed health holistically, $ Respondents described an ideal health care emphasizing the integration of physical, men- system that contrasted sharply with their own tal, and spiritual health. experiences. $ Improving health and maintaining good health $ Respondents wanted health care provid- were high priorities for respondents. ers who are respectful, engaged, and compassionate. $ Family health history and attitudes have shaped individual approaches to health. $ Health care providers should be held account- able for negative interactions and poor $ Many respondents felt that their communities outcomes. made it difficult to be healthy. $ Many, although not all, respondents wanted $ Insufficient personal resources sometimes access to Black physicians. made it challenging to maintain good health. $ Respondents suggested training health care Experiences of racism in health care were wide- providers in culturally and linguistically appro- spread and negatively impacted participants' priate care. health. $ Racism and discrimination have taken a toll on the health and well-being of respondents. "As a Black person, I always have to $ Participantsexperienced racism in interactions ask the question: Did they just do that with the health care system. because I'm Black? Even if it's not true, $ Participants did not always attribute poor it's always on my mind. And not every experiences in health care settings to racism group has to even ask that question or or discrimination. second guess on that level. And that $ Interviewees perceived discrimination based on health insurance coverage. (affects) well-being and (contributes) to anxiety, and even (to) a situation that $ Some respondents attributed negative experi- ences to the health care system's profit motive. might cause someone to say, you know $ Some participants reported avoiding care due what, I'm not going into the doctor, to distrust of the health care system. because I don't feel like having another $ Respondents have taken measures to pre- dismissive experience. And that could vent or mitigate negative experiences during contribute to someone's poor health and health care appointments. even death because maybe something would have been detected on that visit." - 50-year-old Black male, San Francisco Bay Area California Health Care Foundation www.chcf.org 4 Listening to Black Table 1. P articipant Demographics (N = 100) Californians RACE/ETHNICITY n $ African American/Black 83 Multiracial 6 About the Study $ The aim of Listening to Black Californians is to $ African 5 understand Black Californians' experiences with rac- $ Afro-Caribbean 4 ism as it affects health and health care. In Phase I of the three-phase study, EVITARUS, a Black-owned, $ Afro-Latina 1 Los Angeles-based public opinion research firm, $ Native American 1 conducted individual, hour-long interviews with 100 Black Californians from June to August 2021. The AGE n interviewees were recruited through a variety of $ 18 to 29 20 channels that included Black-owned newspapers, social media, word of mouth, faith communities, $ 30 to 39 21 and regional and statewide Black-led organizations. $ 40 to 54 19 The interviews explored the participants' views on health, their experiences with health care, and their $ 55 to 69 22 recommendations for an ideal health care system. $ 70 and older 18 GENDER n About the Participants $ Women 49 The interviewees reflected the diversity of California's Black population. Participants came $ Men 49 from across the state and represented a mix of age, $ Nonconforming/nonbinary 2 gender, racial/ethnic, and geographic backgrounds (see Table 1). REGION* n $ Los Angeles (urban) 24 Almost all the respondents (93%) had some form of health insurance, although the type of insurance $ Bay Area 21 varied across those interviewed. The majority were $ Inland Empire 15 covered through employer-sponsored plans at 40% or Medi-Cal at 26% (see Figure 1 on page 6). $ Central Valley 12 Participants varied in income levels (see Figure 2 Sacramento / Far North 12 on page 6). More than half the respondents rented $ their homes (56%) compared to less than a third $ San Diego / Orange County 12 (31%) who owned their homes. Over half of the respondents said that, at some time in their lives, $ Los Angeles: Antelope Valley (rural) 4 they had been unhoused, without a stable place * See Appendix B for a list of cities and counties included in each region. to live, or stayed with a family member or friend Source: Listening to Black Californians, individual interviews conducted with 100 Black Californians by EVITARUS, 2021. because they did not have a place of their own. In Their Own Words: Black Californians on Racism and Health Care 5 Figure 1. Main Source of Health Insurance (N = 100) Employer-based In Their Own Words 40% During the summer of 2021, one hundred Black Californians participated in individual, hour-long Medi-Cal interviews designed to understand their views on 26% health and well-being, their perceptions of discrimi- Medicare nation and bias in the health care system, and their 11% perspectives on what constitutes a quality health Self-insured/Covered California care system. 7% Uninsured Respondents Held a Holistic View 7% of Health and Prioritized It in Their Other coverage Everyday Lives 6% Participants were asked about a range of factors Tricare/CHAMPVA affecting good health: the role of health in their lives, 2% how they viewed their family health history and its Prefer not to say influence on their own health, and any challenges 1% they encountered in achieving and maintaining good health. Nearly all the respondents thought Notes: Other coverage includes other program/coverage and a parent, guardian, or family member's insurance plan. CHAMPVA is Civilian Health daily about their health and actively worked to and Medical Program of the Department of Veterans Affairs. maintain their health. Many of those interviewed considered good health as essential to their quality Figure 2. Household Income Before Taxes, 2020 (N = 100) of life and sense of well-being. ≤ $20,000 21% "Health is being able to live a full life. Health $20,001 to $29,999 is all-encompassing." 8% - 37-year-old Black man, San Francisco Bay Area $30,000 to $49,999 16% "Health is the environment that you surround $50,000 to $74,999 16% yourself in. It could be the food you eat, $75,000 to $99,999 the water you drink, the people that you 14% surround yourself in, the home that you $100,000+ live in, the air that you breathe, and your 20% mental health." Prefer not to say - 32-year-old Black woman, San Francisco Bay Area 5% FIGURES 1 AND 2: Source: Listening to Black Californians, individual interviews conducted with 100 Black Californians by EVITARUS, 2021. California Health Care Foundation www.chcf.org 6 Respondents Viewed Health Holistically, "For me, health includes physical health. So Emphasizing the Integration of Physical, Mental, and Spiritual Health just the health and wellness of the body Respondents generally defined health in broader overall. It includes psychological health. I terms than physical health alone and held a holistic think, for me, health also includes access view that integrates physical and mental health as well as spiritual and emotional well-being. to healthy food, fresh food, water. . . . And then of course, for me, health also includes "Health is your overall well-being . . . your the spiritual aspect . . . you know, we want mental health and your physical health. You to be right physically, we want to be right have to balance the two or else one could psychologically, we also want to be right fall short. You could be so obsessed with spiritually. . . . I think it is important to have keeping your physical health . . . that you a positive racial identity attitude, as well, start draining yourself mentally, or you could and that's another form of health also." be so in your head that you let yourself go - 50-year-old Black man, San Francisco Bay Area physically. . . . Health to me [is] just your overall well-being." Many respondents described mental health as key - 27-year-old Black woman, Antelope Valley to maintaining their physical and emotional health. "I just want to be more physically and "Really important to me is mental health and mentally and spiritually healthy. Because having somewhere where you can call home. that's what I think of health. I think [it's] all And that's what helped me. I feel like if I dimensions, not just a physical aspect." didn't have those things [that are] important - 33-year-old Black woman, San Francisco Bay Area to me in my life, it brings about sickness. It brings depression and all the other stuff that manifests in the body and causes illnesses. So a lot of anxiety and all those things cause illness." - 48-year-old, Black gender-nonconforming person, Inland Empire In Their Own Words: Black Californians on Racism and Health Care 7 Improving Health and Maintaining Good Even when respondents found it difficult to be Health Were High Priorities for Respondents proactive with healthy eating and exercise, most Nearly all respondents took personal responsibil- considered health a priority and were conscious of ity for managing their health. Nearly all thought actions they needed to take to improve and main- about their health daily, and participants described tain their health. Others mentioned paying attention actively working to maintain health. Many of the to all aspects of their health, echoing the views of interviewees pointed out their own role in achieving many respondents that good health integrates and maintaining good health through exercising, physical, mental, spiritual, and emotional health. drinking water, taking vitamins, eating a healthy diet, going to therapy, and meditating. "I do walk. I take a break and walk. Or sometimes I simply do nothing and read a "I'm going to therapy, take medication, book, watch a game on TV. . . . My relaxing things like that. I'm very much always time is either with a book or TV, movie, or getting physicals to make sure that I'm at walking. . . . . I do take a vitamin every day, the perfect area I can be. I like to go to the a man's vitamin. I don't eat any special gym at least once a day for an hour just to foods. I have a poor diet. I'm trying to watch make sure that I'm keeping my body active. my diet." I like to make sure that at least once a week - 47-year-old Black man, San Francisco Bay Area I go to the park, the beach, amusement park, really engage in family time to keep "I try to exercise so I can loosen up my that bond strong." joints. I used to weigh 314 pounds. I've - 20-year-old Black woman, Inland Empire lost over 100 pounds, after I had my gallbladder removed. So most of the time I eat vegetarian things because that's easier on my stomach, but other than that, I just try to be optimistic. I was trying to find the silver lining. I don't want to be the woe-is-me. . . . Most of it always starts with mental [health]." - 35-year-old Black woman, Central Valley California Health Care Foundation www.chcf.org 8 Family Health History and Attitudes Have Among the participants who grew up in households Shaped Individual Approaches to Health where health was not specifically discussed, many Some interviewees described growing up in fami- recognized the factors that contributed to poor lies who actively distrusted the health care system health in family members, especially regarding and the medical profession. diet, and to a lesser extent, exercise. Family histo- ries made many respondents aware of the effects "I know my family doesn't like doctors. A few of unhealthy habits as they witnessed the impact of poor diets, cigarette smoking, and alcohol con- of them don't, so a lot of them don't go. . . . sumption on their relatives. I just grew up that way. That's what I saw. . . . They always said growing up, we had tough "I think it's created in me a desire to be more skin, real resilient . . ." healthy, because I've observed some of - 24-year-old Black man, Los Angeles those elders and some of those ancestors, and what happened and how some of Many respondents said their families rarely dis- them died young or had diseases that were cussed health and healthy living when they were growing up. Instead, respondents learned indirectly causing them a lot of stress. So it's helped to about health by observing relatives whose health motivate me to be more healthy." experiences sometimes served as a cautionary, but - 74-year-old Black woman, Los Angeles unstated, tale. Participants acquired information about various conditions, such as heart disease, alcoholism, cancer, and especially diabetes, by wit- nessing parents and grandparents living with these diseases. "It wasn't conversation about health, about what was wrong with someone's health. [Instead] it was so-and-so has sugar, so-and- so lost their leg, or so-and-so might have high blood pressure. But in terms of general conversation about health and what is healthy, that conversation didn't exist." - 74-year-old Black woman, Los Angeles In Their Own Words: Black Californians on Racism and Health Care 9 Other respondents described the positive influence Respondents described parents taking an active of family members who modeled healthy behav- role in seeking good health for their families, often iors. Respondents recalled parents or grandparents in the face of significant challenges. who took an active role in maintaining the family's health, including managing their diets, caring for a "In low-income communities health care child's asthma, advocating for a sick spouse with the health care system, and using proven family rem- is terrible - so terrible that when I was edies to treat minor illnesses. growing up, my mother would not take us to the local hospital or clinic in our "I will say [healthy modeling] influenced me neighborhood. We caught two buses when a lot because I was raised by my great- I got sick to go somewhere else. . . . And grandmother. I would always go to the then the other thing that my mother did was health food store with her. She was on top of that whenever I would be sick . . . or if I had vitamins, just making sure that I was eating to go to the dentist, she did everything at healthy, having the nutrition that I needed, the children's hospital that was connected to whether it was iron, vitamins. . . . A lot of the University of Chicago. It was a university stuff that she brought into my life are some research hospital, and they had really good of the things I have carried on with me. . . . doctors there. So even though we were on So that's where I could say me being on top welfare, they did accept her medical card. of my health came from her." And the care there was really good. It was - 25-year-old Black woman, Sacramento/Far North night-and-day different than the hospitals and clinics in our neighborhood." - 55-year-old Black man, Los Angeles California Health Care Foundation www.chcf.org 10 Many Respondents Felt That Their A number of participants directly linked neighbor- Communities Made It Difficult to Be Healthy. hood safety to the ability to be outside for exercise Many participants mentioned a variety of factors and recreation. that diminished their quality of life and made it more difficult to be healthy. Respondents described "My parents feel safe to walk around, community-related barriers to good health, such as poor air quality, unsafe drinking water, or high levels exercise, because they like to count their of crime. Interviewees also noted that their neigh- steps. . . . There's a little man-made lake borhoods lacked recreational areas and grocery across the street from where we live, so it's a stores that sold fresh, healthy food. nice area where people can walk around. It's Several interviewees mentioned not feeling safe in like a trail, and many families go there. It's their communities due to crime and gun violence; really nice because you get to be outside. . one respondent said she did not feel comfortable being outside in her neighborhood. Others said the . . Walking is a nice exercise and the easiest prevalence of people experiencing homelessness thing you can do, so it's really good." affected the quality of life in their community. - 27-year-old Black woman, San Diego "We live . . . in one of the nicer areas in San Francisco. . . and because of that, the Many participants pointed to environmental issues pandemic brought in a lot of homelessness affecting the health of their communities. A few respondents mentioned the air pollution caused and a lot of targeted crime in our area. by California wildfires, but many others pointed to And it's almost to the point where it's generally poor air quality and unsafe drinking water unsafe. And it's at the point where we're in their communities. moving and we're leaving California after "It's a slaughterhouse . . . and the smell this month." sometimes is horrific. And all the residents - 40-year-old Black man, San Francisco Bay Area that's lived here like myself, all my life, have been affected by it. You can smell it throughout the whole southwest Fresno and the areas, you can smell it is bad-not all the time, [but it's] unhealthy and unsanitary." - 66-year-old Black woman, Fresno In Their Own Words: Black Californians on Racism and Health Care 11 "The water in LA is horrible. Everything "In a lot of urban areas, we live in food comes out of the faucet murky, or it smells deserts and food swamps, so people weird, or I've actually had family get sick on don't have access to healthy fruits and the water just over here. And then there's vegetables." a lot of factories and trucks and whatnot. - 31-year-old Black man, Los Angeles I wouldn't say the air is the greatest, but that's California, you know?" "If people don't have access to fresh foods, - 24-year-old Black man, Los Angeles then they're more likely to consume fast food, and the rate of obesity, it gets higher." Respondents contrasted the abundance of fast - 32-year-old Black woman, San Francisco Bay Area food options in their communities with the scarcity of recreational facilities and walkable areas. A few respondents said they did not face sig- nificant barriers to maintaining their health. Some "There's a lot of fast food around here. We individuals mentioned living in a clean and safe don't get a lot of exercise because there's environment, especially if they lived farther away from an industrial area. Some participants men- not a lot of places to go. . . . There's not a tioned that they tried to work around obstacles or lot of parks around here. We got one park, they blamed factors other than the quality of life in and it's adjacent with a church. . . . a lot of their communities for experiencing poor health. gang activity, a lot of drugs in this park. . . . Insufficient Personal Resources Sometimes It's not a good place to bring kids, despite it Made It Challenging to Maintain Good Health being a park." Many interviewees noted that a lack of personal resources presented challenges to pursuing good - 35-year-old Black man, Central Valley health. A number of participants mentioned it was difficult to obtain expensive or scarce resources to Participants repeatedly mentioned nutritious foods support their well-being. as important to good health and described how the lack of access to fresh and healthful foods had "When I think about health, I think about implications for their health and for their commu- nity. A number of people pointed to the difference . . . having resources such as health care between the variety and quality of foods in wealthier insurance, resources to get you the proper neighborhoods and those available in their commu- mental health that you need. And I think a nities. Others mentioned the outsize prevalence of unhealthy fast food options in their communities. lot of those resources aren't given out in the community that I stay in." - 32-year-old Black man, Los Angeles California Health Care Foundation www.chcf.org 12 "I feel like, in my community, if you don't Experiences of Racism in Health Care Were Widespread have the money to be able to maintain a and Negatively Impacted certain lifestyle, then you're probably going Participants' Health to be a little on the unhealthier side. You IInterviewees were were asked about their views on must pay to go to the gym; you have to pay racism and discrimination in California in response to eat good groceries." to a range of questions covering three main top- ics: racism in general, experiences with racism and - 25-year-old Black man, Inland Empire discrimination in the health care setting, and the impact of racism and discrimination on their health Several respondents noted that in addition to a lack and wellbeing. For most participants, racism was an of availability, fresh produce and meats were also ever-present backdrop to their lives. cost prohibitive. "It's just something that's there. It surrounds "I think, definitely, it's harder to be healthy. you, it's your life. It's what you think about, Like, if you go to a grocery store, what can so you're always aware. I am always thinking you get cheaper? You can get unhealthy about racism and how [you are] being food. Organic food is always priced treated." extremely high. There's fast food places - 74-year-old Black woman, Central Valley on every corner basically. It's just really tempting to go the unhealthy route in my "Growing up Black. It's . . . a different opinion." experience for me than other races . . . - 22-year-old Black woman, Antelope Valley People tend to dislike you because of your color." - 23-year-old Black man, Los Angeles In Their Own Words: Black Californians on Racism and Health Care 13 Racism and Discrimination Have Taken a Toll Participants Experienced Racism in on the Health and Well-Being of Respondents Interactions with the Health Care System Most respondents reported that they had experi- The health care system does not exist in isolation enced racism in their lives. Many disclosed that for respondents, and most shared personal experi- racism impacts their health, especially their mental ences with racism in health care as well as in other health. parts of society. Few respondents had expectations that the health care system would resolve their "Oh, I think it does, especially mental health. medical issues, improve their health, or provide a rewarding experience because of racism. I really do. I think racism does [affect you]. Just think If someone calls you a name. How "Nobody should ever have to feel like . . . do you react? You go home, you may get they have to turn themselves away from a headache. You know, like me, everything getting the proper care they need. I have affects me in my stomach." faith in a lot of stuff, but the health care - 70-year-old Black woman, Los Angeles system I don't have faith in. I don't. And I do have to turn that around, but I just can't. "Every time I see cops, I can feel my blood I'm afraid." pressure rising, and I get scared just - 35-year-old multiracial man, Central Valley because of the incidents that I've had with them and just seeing the way they treat "We are vulnerable. We see things that African American people. It's a lot. My some people may never see. And we blood pressure definitely always rises every have these holes because of the way time I see [them]. My heart stops. I feel like we've been treated everywhere else. We that impacts my health, because one of get discriminated [against] in the street, these days I'm just going to have a heart discriminated against at work, and even attack, and they could've been just asking, within groups of friends, but one place you 'Are you okay?'" should feel safe is at the doctor's." - 24-year-old Black woman, Antelope Valley - 35-year-old Black man, Central Valley California Health Care Foundation www.chcf.org 14 Many participants felt they were not respected or In some cases, respondents described how health viewed as an individual because they were Black. care providers did not listen to them, resulting in delayed or missed diagnoses. "I think after living a whole lifetime of being Black, I think you know when people are "I don't believe that I get taken seriously treating you differently. I think we have for my ailment. One of the worst things some sort of radar for that . . .the way that I've had happened to me: I went to a clinic they talk to you, are looking (at) you . . ." and [told] this doctor I have very bad side - 40-year-old Black man, San Francisco Bay Area pains. Now, I normally am a healthy guy. So when my stomach . . . is messing up on me, "I'm coming to you with respect and I'm it concerns me. So I normally would sleep appreciating all that you guys are doing and it off, I'll get some rest . . . but it wasn't working through a pandemic, especially, working. I couldn't hold down any food. I it's very hard. You know, you guys are couldn't walk. I couldn't eat, do anything. appreciated, but it's just like we would want So I went to a clinic and I told them what it to be reciprocated to everybody, equal." was wrong. And they prescribed naproxen, - 27-year-old Black woman, San Diego which is generic for Midol and Advil. [So] I went to the hospital and had dual kidney infections. . . . I just don't think they take me seriously. . . . I don't think they take me as seriously as they would a White man or a White woman." - 35-year-old Black man, Central Valley In Their Own Words: Black Californians on Racism and Health Care 15 Participants recounted numerous episodes of inap- Even Celebrities Have Not Been Exempt propriate treatment that they attributed to racism from Poor Treatment on the part of medical personnel. When asked, many respondents were aware of recent news stories regarding the tennis "I was working at UCLA many years ago, and star Serena Williams, who almost died during childbirth because the medical personnel tak- I needed some dental work done. So UCLA ing care of her downplayed her prior medical has an excellent benefits program. You can history and her concerns about experiencing a blood clot. Respondents drew a parallel go anywhere you want. And so I chose this between these incidents and their own doctor in Beverly Hills because it was on my experiences and concerns: way to work. And I just thought, 'Oh okay, "I'm not surprised that it happened. I it's just a dentist.' And when I met with him, guess I'm surprised that it happened he pretty much told me, 'Don't you want to someone of such a high profile . . to go somewhere in your neighborhood?' . with that kind of money. So the fact Because at the time, I was still living with that even someone like Serena Williams my mother in South Central. 'Wouldn't you can't get decent medical care or get her feel more comfortable?' That's what he said needs listened to is just an example that to me. And I was really young. I was in my it is everywhere. . . . It doesn't really early 20s. I didn't know how to respond, but matter how much money you have. If I knew that it was racist, that he would say they don't want to listen to you, even something like that to anyone, regardless being a world star tennis player, they're of where they lived. That made me really not going to listen to you." uncomfortable, and I never went back." - 25-year-old Black man, Inland Empire - 58-year-old Black man, Los Angeles "It's sad, it's frustrating, but more "[The dentist] . . . made some kind of than anything, it's terrifying, because remark when I had to have a tooth done, I haven't had children yet, and I plan and I wasn't completely asleep, so I could to. So it is just a reminder that if it hear. I heard him tell one of the other girls can happen to this world-famous, rich that he was tired of my Black [expletive] athlete . . . that it could absolutely . . . and he hoped I wouldn't come back happen to me when I have children. And to his office anymore. And then he made I could die from it, so that's terrifying." a comment about my breasts . . . but he - 31-year-old Black woman, Central Valley didn't touch them. - 48-year-old Black woman, Central Valley California Health Care Foundation www.chcf.org 16 Dissatisfaction and Disappointment Occurred at All Points of Contact with Health Care Respondents described dissatisfaction and disappointment in their treatment at all points of contact with the health system. Many interviewees attributed negative experiences to implicit or explicit racism by health care workers and providers. Some interviewees pointed to receiving different or worse care than patients of other races/ethnicities at the same facility. Many respondents felt like they waited longer than other patients in the hospital or medical office reception area. Several participants related stories of waiting hours to receive care in the emergency department. "I go to emergency . . . and it was not [very] crowded, but it was a little crowded. They called me in the back, sat me in a chair. The doctor came over and talked to me, asked what was going on. And I explained to him what's going on . . . you know how they put you in the emergency room in a bed. I sat there for two to three hours in that hallway of the emergency room. They never put me in a room. They . . . took me to a lab to do some x-rays and [then] sat me right back in the chair. I asked the nurse, 'Why do you guys have me sitting in this chair the entire time I've been here?' [She said,] 'Oh, well, the beds are full, and the particular doctor you're dealing [with is the only one] working in this particular section.' I said, 'Whoa, wait a minute. I've watched other people come in and out of rooms since I've been here. So why didn't you put me in one of those rooms?' She said, 'Well, that could have been a different doctor.' She came up with all kinds of excuses as to why they left me sitting in a chair. . . . When I walked around the whole emergency ward, everybody was in a bed. Some were in the hallway, but they were in a bed. They weren't sitting in a chair like me. There's only one other African American person I saw there that particular day. So I'm [thinking,] 'Oh gosh, I hope this is not a racial thing.' That just crossed my mind." - 60-year-old Black woman, Los Angeles In Their Own Words: Black Californians on Racism and Health Care 17 Respondents gave examples of medical encounters "Yeah, I have had a number of negative in which their concerns were overlooked or down- played or they received poor treatment. experiences, especially people on the front line when I go into the office. They expect "It's a lot of attitude, not letting me finish you to comply with a regimented system. talking, a lot of rudeness, a lot of disrespect We rush on the care and we triage the and feeling like they're a better, higher person who we think is most in need of power. I can personally say that I witnessed taking. No matter when you came in, we that at the . . . hospital that I took my triage the person who's sickest. So, me with daughter to. It was a lot of rudeness going a tight schedule, I just get upset if I have on, and they said, 'Just sit her by the door,' to wait a long time to be seen. . . . I can't just set me and my baby in the hallway. . . . I help but think that I'm being discriminated said, 'My daughter has sickle [cell anemia)], against, they see a Black person. And you she needs to be seen right now; I'm not don't get the attention that a White person waiting. All you guys are conversing and gets, for example." laughing. . . . Less laughing, more working - 86-year-old Black man, Inland Empire and treating my child. I don't know if my child's dying right now . . . you guys are sitting back laughing, making comments, being rude, brushing past people.' I told them, 'I will be leaving a report on this whole hospital. I don't like the service . . . it needs to be fixed and upgraded [with] new staff, or you guys need to have a staff meeting and work on how you present yourself.'" - 21-year-old Afro-Latina woman, Inland Empire California Health Care Foundation www.chcf.org 18 Respondents Reported Their Pain Was Undertreated or Left Untreated Respondents singled out pain management as a major cause of their distrust of health care and medical pro- fessionals. Participants recounted numerous instances when they or a family member were given insufficient pain medication or no medication at all. They told stories of doctors who they described as indifferent to their suffering, who dismissed their concerns because they felt Black people did not feel pain, or who assumed the patient was "drug-seeking." "They [doctors] have a perception that . . . we don't need pain relief . . . that all you have to give them [Black people] is just some ibuprofen, and they'll be fine . . . because they're Black, and they can take it." - 55-year-old Black man, Los Angeles "[After breaking a leg], if I received high-quality care, that means that I would be in the hospital, would have had the surgery and everything completed the first day. I would never have had to come back home and wait two or three days and take medication . . . that could have worked better than Advil or Tylenol, that really didn't help. And I feel like if I did have high-quality care, they would have prescribed something a little bit stronger that really would have taken care of the pain. Because [I was] just getting out of surgery and had holes in my leg, and my leg was swollen maybe the size of a pomegranate. You can't walk, can't put pressure on it. You can't do anything. And I mean I could just remember laying in bed, rocking, crying myself to sleep because I was in pain. And honestly, I'm not gonna lie. If my girlfriend was not going through cancer and didn't have the medication she had, I would probably have been in more pain. Because she gave me medication that she had to make her better." - 34-year-old Black man, Sacramento/Far North "I've had doctors stop me and ask me what's wrong and make it seem like I'm making it [pain] up. - 24-year-old Black man, Los Angeles In Their Own Words: Black Californians on Racism and Health Care 19 Participants Did Not Always Attribute Poor Interviewees Perceived Discrimination Based Experiences in Health Care Settings to on Health Insurance Coverage Racism or Discrimination For some, discrimination was evident in inferior, ill- Even as many respondents attributed negative equipped health care clinics in their neighborhoods interactions to racism, a few hesitated to attri- versus better-equipped and better-maintained bute negative experiences solely to racism and facilities in other communities. Some respondents framed the issue as a lack of respect. In expressing attributed the inferior facilities to lack of funding, uncertainty or doubt about the causes of negative calling out in particular the lower reimbursement experiences, respondents noted the importance of rates provided by Medi-Cal versus that from private mutual respect. Some participants were careful to insurers. acknowledge the difficult work performed by health care providers, especially in the face of additional "The clinics in, let's say, a Black neighbor­ challenges presented by the COVID-19 pandemic. hood, for Black and brown people . . . One respondent described an exceptionally long the facilities and the equipment will be wait for care. substandard as well. So [in] their . . . "I don't want to say anything was business practice, they're just trying to intentional. Maybe . . . after the pandemic, get this government money, because . . everybody is trying to get to doctors and . most of their clientele isn't on company trying to get to their appointments, and insurance - it's Medi-Cal or it's some form maybe they were [considering] that, 'Oh of general assistance . . . so . . . when you well, she's just here for follow-up. So she's talk about things like Medi-Cal, basically not urgent, she can wait." [paying] 10 cents on the dollar for what - 72-year-old Black woman, Sacramento/Far North [the clinics] charge. So how hard are you going to work if I charge $1 for my services, and you're only going to pay me 10 cents, 10% of that?" - 55-year-old Black man, Los Angeles California Health Care Foundation www.chcf.org 20 Other respondents pointed to discrimination "I can say that the health care that I receive around health insurance as a reflection of socioeco- nomic status. Interviewees described how having is great only because of the insurance that "good" employer-sponsored, private coverage I have. . . . You don't have the insurance resulted in better treatment than that resulting from to pay for it, then they don't want to see having Medi-Cal. you. They only want to see the people that "[The hospital where my wife gave birth] did have the money. . . . the only reason why a good job. A reason I know this through I have that [insurance] was because of my my wife's two best friends . . . I heard about employment; without my employment, the stuff my wife's friends went through and I wouldn't have the treatment that I'm their experience during childbirth. I couldn't receiving right now." - 49-year-old Black man, Antelope Valley imagine the [expletive] they went through. But both of them had their children through Medi-Cal, through the state, through the "People have different kinds of medical system, whereas we have private insurance coverage. And so if I have Kaiser through and a private doctor, and we picked the my job, and somebody else also has Kaiser, hospital. We picked everything." but it's through Medi-Cal or something like - 31-year-old Black man, Los Angeles that, they probably get a different kind of treatment at that front desk - probably Participants who had not encountered specific similar to someone going into the grocery problems attributed better treatment to better store, and they're just using their regular health insurance coverage and speculated about poor treatment for those with Medi-Cal. ATM card, and someone else is using their card [that] is the equivalent of food stamps, they probably get treated differently . . . they don't get that extra level of hospitality. And I think that that also happens in the health care field. . . . If you're not fully paying for your insurance, then you don't get the full treatment, even though [the provider] is getting their money . . . so give me the treatment that I need." - 50-year-old Black man, San Francisco Bay Area In Their Own Words: Black Californians on Racism and Health Care 21 Some Respondents Attributed Negative Some Participants Reported Avoiding Care Experiences to the Health Care System's Due to Distrust of the Health Care System Profit Motive Despite potentially adverse health consequences, Many participants described a system driven by many respondents reported delaying care or going financing and profit rather than patient-centered without medical care due to prior discrimination care. Respondents cited examples of rushed experienced by themselves or family members. appointments and lengthy wait times due to an overarching focus on the business aspects of health "Yes, [the health care system] makes me care. Participants experienced a general lack of friendliness and kindness they blamed on excessive resistant to get the care that I need. And attention to the financial bottom line rather than it makes my health even worse, because concern for the patient. I'm not going to do preventative work or intervention. I'm just trying to do work "And every time I go behind that door, it's afterwards, which is worse. So it does affect like, how (are) they gonna make me feel my health in a negative way." today? Are they gonna make me feel like - 33-year-old Black woman, San Francisco Bay Area they're gonna do something for me or I'm just going for them to get my money from "My last option is a doctor, I'm gonna be the insurance? That's the way I feel." honest with you. My last full complete - 74-year-old Black woman, Central Valley option, like if I'm dying, I'll go to a doctor. Like I said before, I'll try to keep all my ". . . for the providers, it's a business. It's a remedies and stuff at home . . . because I've business. I've managed to get the care I had crappy doctors. My experience in the need because I'm a (expletive) about it. But health care system has been garbage. I hate that doesn't mean that they're doing the going to a doctor. I just hate it." best by their patients; they could be doing - 35-year-old Black man, Central Valley so much better." - 71-year-old Black woman, San Francisco Bay Area "The people who run the hospital systems, again, it's for-profit motive. Even Kaiser is a nonprofit, but they turn billions of dollars of profits a year." - 41-year-old Black man, San Francisco Bay Area California Health Care Foundation www.chcf.org 22 Many interviewees said they relied on home rem- Respondents Have Taken Measures to edies, an approach used by their parents and Prevent or Mitigate Negative Experiences grandparents. If they needed help with health con- During Health Care Appointments cerns, a number of participants turned to friends, Many respondents anticipated discriminatory inter- families, or online advice lines before contacting a actions and attempted to blunt the impact by using a health care provider. variety of strategies to prevent or mitigate negative experiences or unsatisfactory outcomes: dressing "So I am totally a home remedies person professionally, changing their tone or manner of speaking, and attempting to appear approachable. as an initial response, if it's something I'm Those participants who were taller or more full-fig- familiar with. If it's something really drastic, ured mentioned making those around them more then I have Kaiser, and I will contact the comfortable by always speaking in a happy tone. Some participants described efforts to seem "pre- advice line. . . . My go-to response for any sentable," noncombative, or nonthreatening. health issue is always a home remedy of some sort as a first line of defense. . . . I'm Respondents also said they mention relatives in the health care field or their own professional qualifica- kind of stubborn about it, but I don't really tions during doctor visits in order to convey their take a lot of Tylenol or things like that; I have level of education and information resources. In to be in pretty significant pain for me to take their view, this information was likely to "make doc- tors much more careful about how they treat you or a prescription. . . . If it is something that I what they prescribe for you." do need medical assistance with, or I don't know what to do and I've thrown all the "I think that, while oftentimes I do not things that I can at it, I will contact the Kaiser necessarily change my appearance when I advice line, or I'll email my doctor." go to the doctor, I found myself throwing - 31-year-old Black woman, Central Valley my job, my education, things like that into [the] conversation differently. Because I think it changes the level of service that I get, at times." - 31-year-old Black woman, Central Valley In Their Own Words: Black Californians on Racism and Health Care 23 "I think the only thing that works is I tell Some respondents described the importance of advocacy. them that my brother is a physician, and he will call you. They tend to be a little more "It's being [my children's] advocate. . . . I'm careful about what they're prescribing the dad that's willing to take off [time]. I or what they're doing to you. They know don't care if I'm in a meeting with the mayor. that somebody is going to look after you. My son has a phone. If my son's calling me, And I do that for other people. I'll call and I'm in the middle of a presentation, I for them, [offer to] call that hospital, the don't care, I'm taking that phone call. So, doctor, because I think having an advocate for me, it's about showing I'm going to be is important. And it's sad that it has to be there. And I've never missed a doctor's that way. But I think that knowing that there appointment for either one of my kids, and might be repercussions, if they don't treat I don't plan on doing it for the near future. you right [is important]." So being there, I think a lot of the part is just - 66-year-old Black woman, Fresno being there for them . . . until they get older to that point where they don't want dad in In many cases, interviewees armed themselves with information prior to a visit, researching their symp- the room anymore." toms and treatments. - 37-year-old Black man, San Francisco Bay Area "I often go in having researched my own "Yeah, I recognize that . . . the more you things. I can't just rely on what [the doctor advocate about your own health, the more is] going to tell me or [when they] just push issues get addressed. And if you're not an back and say, 'Oh you're fine, just wait for advocate, sometimes you can be left kind of this.' I do my own research to where I feel on the sidelines." like I have to go in informed already and just - 75-year-old Black man, Sacramento/Far North kind of have them confirm what I'm thinking as opposed to really asking them for advice and their own perspective, because that can just end up being insignificant." - 31-year-old Black woman, Central Valley California Health Care Foundation www.chcf.org 24 Older participants described how their ease with Respondents Described an Ideal Health Care advocacy had increased over time. System That Contrasted Sharply with Their Own Experiences Respondents described the current system of care "I thought of the doctor as the expert. And as transaction-based and focused on the bottom I was going to him in order to have him tell line rather than one that emphasizes the health me what I should do or what I shouldn't do. and well-being of the individual patient. Many of the comments interviewees made about a quality I didn't see myself as a participant in my health care system echoed their views on what con- own health care. I thought [if] you listen to stitutes health. In describing the ideal health care this person and that person, the system will system, participants looked for a holistic system of care that understands each patient as an individual solve whatever problems I have. And as I've and takes into account their life circumstances, grown, that's changed. . . . When you go see social context, and mental health, while treating your doctor, you're supposed to have a list their physical health. of questions to ask." Respondents had specific recommendations for a - 74-year-old Black woman, Los Angeles health care system that is high quality, addresses discrimination and bias, and is more responsive to the needs of Black patients. The reception area, Participants Envisioned High-Quality where patients first interact with a doctor or facil- Health Care as Patient-Centered ity, was singled out as key to making patients feel and Proactive welcome. Interviewees were asked to describe what a high quality health care system would like like. "High-quality care for me is to see a practice Respondents viewed respect, kindness, and con- that's really focused on the patient's well- nection as key elements of high-quality care. being from all aspects, from the moment "I will welcome you. I will make you feel that person picks up the phone and talks like family, instead of some person off to that office or their online interaction - the street." whatever the interaction - from the initial - 38-year-old Black woman, Inland Empire interaction all the way to the end, that the focus is on the patient. And it's not about anything else. It's not the agenda of the office. It's not the agenda of the doctor. It's this focus on the patient." - 54-year-old Black man, San Diego In Their Own Words: Black Californians on Racism and Health Care 25 Respondents Wanted Health Care "I mentioned the doctor [who gave me] the Providers Who Are Respectful, Engaged, and Compassionate best level of care that I ever received. He sat Many respondents described ideal health care pro- down quietly, looked at me in my face . . . fessionals as ones who are proactive and who look wasn't looking around. Talked to me about for solutions rather than defaulting too quickly to prescriptions or testing. my life. [Explained,] 'We're going to do blood tests on everything. . .' I was ecstatic. "[A quality health care system would be I called my wife: 'I met the best doctor ever.' that] . . . they actually see what's going on And that was the best care I received. And with you, and they listen to you. And they that's what I envision it would look like . . . at least show they care. . . . If something is a doctor saying, 'Anything else you want to wrong with you, they work with you to get ask me?' Because I [didn't] ever feel like I you better. Instead of saying, 'How are you got to ask the questions, and if I did, maybe feeling today? Well, I'm going to give you I was just too spooked to ask because of this prescription.' . . . If you do have a test how I felt inside about not being believed. . and something is wrong, they're going to . . That's how it would look for me to receive work toward you getting better instead of great care. And I received it once, so I keep just saying, 'Just take a pill.'" going back to this doctor." - 74-year-old Black woman, Central Valley - 35-year-old Black man, Central Valley California Health Care Foundation www.chcf.org 26 Most of all, the interviewees would like a system Health Care Providers Should Be Held of care built on a relationship with compassionate Accountable for Negative Interactions and providers who actively listen and engage with each Poor Outcomes patient. In the stories respondents told of their interactions with the health care system, a number of people pointed to accountability. The lack of accountability "There's some kind of relationship [with] on the part of hospitals or doctors was repeatedly that person. Although they're your doctor, mentioned in their descriptions of inadequate or they also care about you and your family, insensitive treatment that resulted in poor out- comes for themselves or family members. as an entity. . . . I think that happens more with pediatricians. Sometimes pediatricians "I think there needs to be some type of know all the children, they know the mom, [system] where people can acknowledge they know the dad. And it feels a bit more people's voices. People need to be familial and connected. But with an adult, accountable for what they do." your practitioner or whatever they're called, - 65-year-old Black woman, Sacramento/Far North it's just a transaction. They don't really know who you are outside of that visit. So my "Black people need to be educated that high-quality health care would include the they have a right to proper healthcare, no relational aspect, and not feeling like this is matter what. In that, you have to be willing just a business." to demand this, and if you don't get it, - 50-year-old Black man, San Francisco you have to be willing to file a complaint . . . with the state agency. A doctor gets enough complaints, it will affect his license . . . [and] his board certification of practice in that state. If a person . . . is not going to change their behavior towards you, if there are no repercussions and consequences. . . . And so we have to educate ourselves and be willing to do what it takes to cause repercussions and consequences . . . when we're mistreated by way of discrimination or more bias." - 55-year-old Black man, Los Angeles In Their Own Words: Black Californians on Racism and Health Care 27 Many, Although Not All, Respondents A few participants cautioned that just having a Black Wanted Access to Black Physicians physician did not automatically result in better care, In general, respondents would like to see more citing negative experiences with Black physicians Black physicians. Several mentioned the difficulty of and other health providers of color: finding one. "So I'm already facing discrimination when "I would prefer to have a Black doctor, the doctor walks in and [says,] 'Your BMI'. I probably even a Black female doctor, didn't even ask about my weight, I'm there because I feel like they probably would for something else. . . . It is the subtle, listen a little bit more. But there weren't any the microaggressions that happen within available in my neighborhood close to me. the health care field. So I am resistant to - 41-year-old Black man, San Francisco Bay Area. get help unless I feel comfortable with the person who may or may not look like me. "We need more Black doctors and more But I also have been discriminated against a Blacks in the health care field . . . [who] can lot from Black physicians as well." relate to our issues and will be willing to call - 33-year-old Black woman, San Francisco Bay Area their colleagues out, hopefully." - 38-year-old Black woman, Central Valley Several pointed to the lack of available mental health services attuned to Black people and the scarcity of Black therapists. "I think in terms of health care for Black people and therapy, one of the main calls that I get from Black folks around mental health is trying to find a Black therapist that they can connect to, so definitely in the world of mental or behavioral health. It's already difficult for some Black people - I think things are getting better - but it's already difficult for some Black folks to even show up or reach out for counseling or therapy." - 50-year-old Black man, San Francisco Bay Area California Health Care Foundation www.chcf.org 28 For LGBTQ+ respondents, seeing a Black physician Respondents Suggested Training Health was less important than seeing one sensitive to the Care Providers in Culturally and Linguistically needs of the LGBTQ+ community. Appropriate Care Respondents noted that providers should have some understanding of the cultural history and "Well, it can be both ways. Being LGBT, if I health of all patients, including specific training as was heterosexual, I think that it would feel a part of medical education. lot better to know that an African American doctor is present or whatever for me, but "Cultural competency needs to be a part . when you're LGBT, it doesn't matter. There . . as much as any other training that the are African American doctors that are doctors have. They need a year of ongoing against LGBT individuals. So it's kind of like cultural competency at the same time that you just got to keep going through doctors. they're receiving their training and residency Sometimes I'll go through a lot of doctors or whatever. Because assumptions kill before I find the right one . . . because I'm people. Assumptions really do, if you don't a person. I have a soul, and [I want a doctor ask the question. A doctor is only as good as who is] willing to take care of me because I the detective that they are." came to see the doctor for help rather than - 71-year-old Black woman, San Francisco Bay Area to judge me." - 48-year-old Black gender-nonconforming person, Inland Empire "In addition to being multiracial, I'm part of the LGBTQ community, so I do try to find doctors that are LGBTQ-friendly. That is one thing I do look for, for sure. Because I do know that there can be an issue with how a doctor treats you, I'd rather not have to deal in my medical care with the potential ramifications of anyone's beliefs." - 23-year-old multiracial man, Inland Empire In Their Own Words: Black Californians on Racism and Health Care 29 Conclusion In Phase I of the three-part Listening to Black When asked to define "high-quality care," many Californians study, 100 Black Californians were interviewees described a system that is patient interviewed about their views on health, their centered as opposed, in their view, to one driven experiences with racism and health care, and their by profit. For many, high-quality care was person- perspectives on quality health care. The interview- alized care, evident in doctors who listen to each ees, who ranged in age from 18 to 86 and resided patient and consider the patient as an individual. A in locations across the state, were selected to rep- number of participants, although not all, preferred a resent the diversity of Black Californians. Their Black doctor. For some, a proficient, compassionate firsthand stories created a mosaic of experiences doctor, regardless of race, was paramount. Several and views that illustrated how Black Californians interviewees recommended that medical educa- regard health and the health care system. tion include culturally and linguistically appropriate training so that providers would be sensitive and Most study participants described health in holis- responsive when treating patients of color. tic terms that emphasized the importance of all aspects of health: physical, mental, and spiritual. Phase II of Listening to Black Californians will high- For many, mental health was the key to maintain- light structural issues in the health care system ing physical health. Many conversations highlighted through discussions with Black Californians and key how important good health is to the study partici- health care stakeholders participating in 18 focus pants and the consideration they give to achieving groups. The groups will be segmented by gender and maintaining their health. At the same time, identity, sexual orientation, age, region, health many participants also described a range of fac- insurance coverage, and role in the health care sys- tors that have made it challenging to stay healthy tem. The third and final phase of the study will be a in their communities, including poor air and water statewide survey of 3,000 Black California residents, quality; unavailability of fresh, affordable food; and designed to assess the extent to which the Phase I limited access to safe outdoor space for recreation and Phase II findings are represented in the gen- and exercise. eral Black Californian population. The final report is expected in summer of 2022. Many, although not all, interviewees viewed the health care system with distrust due to experiences Taken together, the three phases of Listening to with racism and discrimination. Interviewees repeat- Black Californians present a unique opportunity for edly mentioned insufficient pain management as a policymakers, health system leaders, and health prime example of the discrimination they had expe- care organizations to respond to the issues and chal- rienced with the health care system. Participants lenges with health care in the state as described by recounted numerous incidents where medical pro- thousands of Black Californians in their own voices. viders ignored or inadequately treated their pain or that of family members. A substantial number of participants described postponing or avoiding health care rather than taking the risk of encountering discrimination or experiencing a negative interaction. California Health Care Foundation www.chcf.org 30 Appendix A. Methodology EVITARUS, a Black-owned Los Angeles-based public Participant Demographics opinion research firm, is conducting the three-phase Participants reflected the ethnic diversity of Black Califor- Listening to Black Californians study. EVITARUS has nians. The majority of respondents identified as Black or extensive experience polling California's diverse constit- African American. A total of seven participants described uencies and maintains long-standing relationships with themselves as multiracial; one person identified as Afro- Black-led community organizations and media. Latina, and one person as Native American. Recruitment Participants were drawn from seven regions in Califor- A total of 900 people responded to the request to be nia: urban Los Angeles, the rural Antelope Valley region interviewed about the health and well-being of Black in northern Los Angeles and southern Kern Counties, Californians and their experiences with the health care the metropolitan Inland Empire region, San Diego and system. Participants were recruited through a variety Orange County, the Bay Area, the Central Valley, and of channels, including Black newspapers, social media, Sacramento and the far northern area of California. Most word of mouth, faith organizations, and regional and participants resided in metropolitan regions, with 46% in statewide Black-led organizations. Respondents were urban areas and 29% in suburbs. The sample included asked to complete a lengthy recruitment questionnaire participants residing in small towns and rural areas. Some either online or by telephone. After eliminating dupli- areas were oversampled to better understand the experi- cates and partial responses, EVITARUS screened 524 ences and views of residents. questionnaires to reach the final number of 100 interview participants. The participants were almost evenly distributed among five age groups between ages 18 and 70 or older, with A purposive sampling strategy was used to recruit 10 or 11 participants in each. An equal number of men people with specific demographic and geographic (49) and women (49) participated in the study, with two characteristics: targeted age cohorts, gender bal- respondents identifying as gender-nonconforming or ance, socioeconomic diversity, ethnic identity, regional nonbinary. diversity, and health insurance status. The recruitment questionnaire was designed and administered to ensure Over half of the participants rented their homes; almost that those selected for interviews were demographically one-third (31%) owned a home or an apartment. Of the diverse and geographically representative of regions 100 respondents, over half (51%) said they had been across California. Prospective interviewees were asked an unhoused at some point in their lives. At the time of the initial set of screening questions to describe their racial study, over one-tenth of the respondents said they lived and ethnic background. with family, did not have a stable home, or preferred not to say. The greatest number of people experiencing Interviews homelessness during their lives were located in urban Interviews were conducted online or by phone via video Los Angeles or the Bay Area. platform Zoom by professional interviewers trained on the semistructured interview protocol developed by EVI- Four in ten respondents (40%) had employer-provided TARUS. Each interview was approximately one hour in coverage as their main source of health insurance. Over length, recorded with the permission of the participant, one in four (26%) received health insurance through and transcribed to facilitate data analysis. The interview Medi-Cal. A few respondents (7%) were self-insured, pur- process was standardized, utilizing the same set of ques- chasing coverage directly from a health insurer or through tions for each person interviewed. The interviewers were Covered California. Nearly half of the participants (46%) allowed some flexibility to probe questions further for reported household income of less than $50,000, with clarification or to follow up on a line of thought. Interview- one-fifth reporting income of less than $20,000. ees received an honorarium of $125 each in recognition of their time and participation. In Their Own Words: Black Californians on Racism and Health Care 31 Appendix B. Regions and Included Cities/Communities REGION INCLUDED CITIES/COMMUNITIES Los Angeles (urban) Los Angeles, Watts, Inglewood, Gardena, Bellflower, Bell, Cudahy, Encino, Pacoima, Lakewood, Pasadena, Torrance, Santa Monica Los Angeles: Antelope Valley (rural) Lancaster, Palmdale Inland Empire Murrieta, Riverside, Barstow, Moreno Valley, Corona, Rialto, Fontana, Desert Hot Springs, Redlands, Hemet, Ontario, Perris, Beaumont San Diego / Orange Counties San Diego, Chula Vista, City of Orange, Spring Valley, La Jolla, Rancho Santa Margarita, Lemon Grove, Carlsbad Bay Area San Francisco, Oakland, Brentwood, Fremont, San Leandro, Sunnyvale, Oakley, Newark, Hayward, Berkeley Central Valley Fresno, Lodi, Stockton, Bakersfield, Chowchilla Sacramento / Far North Sacramento, Del Paso Heights, Roseville, Rancho Cordova California Health Care Foundation www.chcf.org 32