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International Journal ofEnvironmental Researchand Public HealthArticleUnderstanding Multilevel Factors Related to UrbanCommunity Trust in Healthcare and ResearchMonica Webb Hooper 1,*, Charlene Mitchell 1, Vanessa J. Marshall 1,2, Chesley Cheatham 1,2,Kristina Austin 3, Kimberly Sanders 1,4, Smitha Krishnamurthi 1,4 and Lena L. Grafton 51 Case Comprehensive Cancer Center, Case Western Reserve University, Cleveland, OH 44106, USA2 University Hospitals Cleveland Medical Center, Seidman Cancer Center, Cleveland, OH 44106, USA3 The Gathering Place, Beachwood, OH 44122, USA4 Cleveland Clinic Taussig Cancer Institute, Cleveland, OH 44195, USA5 NEOMED-CSU Partnership for Urban Health, Cleveland State University, Cleveland, OH 44115, USA* Correspondence: monica.hooper@case.edu; Tel.: +1-216-368-6895Received: 15 July 2019; Accepted: 2 September 2019; Published: 6 September 2019Abstract: Background: Community and patient engagement in the healthcare system and biomedicalresearch are prerequisites for eliminating health disparities. We conducted a “listening tour” toenhance our understanding of multilevel factors associated with community trust. Methods: Usingcommunity-based participatory research (CBPR) methods, we conducted a phenomenologicalqualitative study. “Town-hall” style discussions were held at nine sites across an urban, Midwesterncity. We recruited adults (N = 130) via community networks, social media, flyers, and word-of-mouth.Demographic assessments were self-administered and listening tour sessions were conducted bytrained moderators. Themes were framed within the social ecological model (SEM; intrapersonal,interpersonal, institutional, community, and policy levels). Results: Participants were mostly female(68%), African American (80%), had health coverage (97%) and were diagnosed with a chronic healthcondition (71%). The overarching theme was sociodemographic differences in distrust, such thatAfrican Americans and deaf/hearing impaired participants perceived disparities in healthcare, a lowerquality of care, and skepticism about biomedical research, relative to Whites. Conclusions: The depthof distrust for healthcare providers, systems, and researchers in underserved communities remainsstrong and complex. Findings highlight the need to understand the lived experiences of communitymembers, and how distrust is maintained. Multilevel interventions to increase trust and the accrualof underrepresented populations into clinical trials are needed.Keywords: community-based participatory research (CBPR); community engagement; communitylistening tour; distrust; healthcare; health disparities; cancer1. IntroductionHealth disparities are the result of a complex interaction of social, economic, cultural, healthsystem, and political factors. There is a disproportionate and undue burden of chronic medicalconditions and death (e.g., cancer [1] diabetes [2], and stroke [3,4]) among low socioeconomic status(SES) and racial/ethnic minority populations. The social ecological model of health (SEM) provides aconceptual framework for understanding the dynamic and interacting factors that underlie healthand health behavior(s) [5]. These determinants of health include intrapersonal (e.g., attitudes,beliefs, and knowledge), interpersonal (e.g., family, patient-provider relationships), organizational(e.g., healthcare systems), community (e.g., built environment), and public policy (e.g., resourceallocation, health insurance access), each of which contribute to outcomes [5]. The SEM representsa holistic view of the interrelationships among upstream and downstream factors that influenceInt. J. Environ. Res. Public Health 2019, 16, 3280; doi:10.3390/ijerph16183280 www.mdpi.com/journal/ijerphInt. J. Environ. Res. Public Health 2019, 16, 3280 2 of 16opportunities for optimal health. In underserved populations, in particular, the influence of upstreamstructural factors may negatively affect individual-level potential for adaptive health behaviorengagement. As such, achieving the goals of health disparity reduction and elimination will requirea major collective effort (e.g., legislators, health systems, medical providers, scientists, communitystakeholders, families, and patients).Community and patient engagement are prerequisites for positive inroads toward reducingand ultimately eliminating health disparities. The Case Comprehensive Cancer Center (Case CCC)Community Advisory Board (CAB), which represents patient and community voices, identified lowlevels of trust in healthcare and biomedical research as important factors to understand and address.Thus, the overarching goal of this CBPR [6] effort was to deepen our understanding of multilevelfactors related to community trust in an urban, Midwestern city. Consistent with the principles ofCBPR, this study was an academic-community partnership, during which the researchers and the CABeach contributed their expertise, experience, and time at each stage of the research process [6].Previous research has examined levels of trust in the healthcare system and research, althoughmuch remains to be learned in this domain. The literature indicates that racial/ethnic minorities havesignificant distrust overall, and in comparison to Whites [7,8]. Byrd et al. found that lack of trust wasa primary reason for unwillingness to participate in biomedical research among intergenerationalAfrican American males [9]. Even after controlling for SES sex, age, and risk for cardiovascular disease,Braunstein et al. [8] found that African Americans were less willing to participate in pharmacologytrials. Racial differences in medical research distrust and harm-related perceptions partially mediatedthis relationship. A recent qualitative study focused on the influenza vaccine found deep distrust inpharmaceutical companies due to perceived profit motivation [10]. Racial differences in trust for federalinstitutions was a major theme, such that African Americans described greater distrust compared toWhites [10].Medical distrust is important to understand and address, as it may also contribute to poor patientoutcomes [11], low healthcare quality [12], and increased healthcare costs [13]. Such experiences andsubsequent distrust is also related to the underrepresentation of various minority groups in cancerand other clinical trials [9]. In sum, the combination of medical and research exploitation and abuseexperienced by disenfranchised populations, perceived discriminatory experiences, and perceived lackof community benefit [14] have led to greater medical distrust among African Americans comparedto Whites [15–18]. Biomedical researchers seeking to recruit racial minorities for clinical trials havealso expressed concern about the challenges of engagement due to negative beliefs [7]. With thecurrent national focus on obtaining diverse samples for precision medicine initiatives (e.g., the NationalInstitutes of Health’s All of Us effort), research is needed to better understand the nuances of medicaland research distrust in underrepresented and underserved populations, and steps to address thisissue must be undertaken.The Present StudyThe purpose of this study was to enhance our understanding of social contextual factors thatinfluence community trust for healthcare systems and research. Applying the SEM as a conceptualframework, we focused on the lived experiences of residents, with attention to policy, community,institutional, interpersonal, and intrapersonal issues that affect trust levels. We sought to recruita sample diverse in race/ethnicity, SES, and health and disability status—and engage them in anopen-ended forum for sharing thoughts, ideas, and concerns about cancer prevention and control,the healthcare system, and academic/research institutions. Among the goals of the study was to identifydisparities in healthcare and/or research experiences that may elucidate distrust levels.Int. J. Environ. Res. Public Health 2019, 16, 3280 3 of 16We utilized a phenomenological listening tour approach, which in contrast to focus groups, allowedorganic discussions and concentrated on the meanings of participant experiences. Our qualitativeapproach facilitated a deep assessment of a range of factors related to community trust. Finally,this study was unique from previous research, due to its simultaneous focus on both healthcare andresearch distrust, allowing us to understand how one informs the other.2. Materials and Methods2.1. Community Advisory BoardThe CAB was established in 2012, and its overarching goal is to advise on catchment area, healthdisparities, and/or health equity research efforts within the Case CCC. The vision of the CAB is tomaintain a partnership with Case CCC leadership, researchers, clinicians, and outreach teams to havea positive impact on local cancer care and outcomes, and to represent the voices of the community.The need to better understand community trust for healthcare and research was a CAB-identifiedpriority. Thus, we undertook this initiative as an academic-community research team, guided byprinciples of CBPR, with a commitment to a systematic approach to understand community residentexperiences and perspectives, and to disseminate the findings to the community [19].2.2. Study DesignThe Forward Movement Project (Phase I) (see Supplementary Material) was a qualitative study toidentify factors related to community trust for local healthcare systems, perceptions about biomedicalresearch participation, and cancer-related experiences by learning from residents and other keystakeholders. We implemented a community “listening tour” approach in nine neighborhoods in anurban city in the Midwest (United States).2.3. ParticipantsParticipants were recruited from the community using several approaches. We utilized thecommunity contacts of the CAB to convene groups for the listening tour sessions. We partnered with acity councilman and community organizations, who distributed flyers to their constituents on behalfof the project. We also recruited participants via social media, email listservs, and widespread flyerdistribution. Inclusion criteria required participants to be ≥18 years old and reside within the 15-countyCase CCC catchment area.2.4. ProceduresThis study was approved by the Case Western Reserve University Institutional Review Board(IRB). The Community Trust and Engagement Working Group, a subcommittee of the CAB, workedclosely with the Office of Cancer Disparities Research to develop and implement the study plan.We developed two instruments for this study, which reflected the overarching goal of the project—toallow community voices to be heard with very few questions from the moderator. We enlisted thepartnership of key community stakeholders to assist with the identification of locations to conductlistening tour sessions. We identified sites (e.g., community centers, grassroots organizations, barbershops, and health centers) in nine neighborhoods with the capacity to seat 10–50 individuals. Next,we implemented our recruitment plan (described above). Interested community residents contactedthe project’s telephone number to register for an upcoming session or enrolled on site.Listening tour sessions were led by a trained moderator, who guided participants throughthe informed consent process and completion of a brief demographic assessment. Listening toursessions were audiotaped and transcribed verbatim. To facilitate anonymity, participants wereassigned identification numbers, which they stated prior to commenting or responding to questions.The 90–120 min sessions were designed to be participant-driven. The moderator offered the initialquestion, encouraged proactive participation among residents, and allowed conversation to ensueInt. J. Environ. Res. Public Health 2019, 16, 3280 4 of 16naturally. The moderator introduced new questions once no new ideas were offered. Meals andrefreshments were provided at each listening tour session, and participants received a $10 gift card fortheir participation. After data analysis, we developed an infographic summarizing the main findings,which was distributed throughout the community (i.e., at each listening tour site, to communitypartners, and via email and social media).2.5. Measures2.5.1. DemographicsParticipants self-reported age, sex, annual income, race/ethnicity, and chronic disease presence,such as cancer, diabetes, or high blood pressure (yes/no).2.5.2. Moderator GuideThe moderator guide consisted of 11 standardized open-ended questions. Questions assessed(a) experiences with major local healthcare systems, (b) level of community trust for local healthcaresystems, (c) willingness to participate in biomedical research, (d) views on cancer prevention, and (e)expectations for provider/patient relationships. Questions included: (1) Talk about your experienceswith the healthcare system. What instances stand out in your mind and why? (2) Do you trust the localhospitals to provide you with effective treatment and care? (Why or why not?) (3) What things get inthe way of you getting the healthcare you need? (4) What are your thoughts about ways to removeor reduce those barriers? (5) Lots of research is going on at the university and hospitals. What areyour thoughts on research? Would you participate in studies and/or clinical trials? (Why or why not?)Do you know anyone who has? (6) What can healthcare providers and researchers do to gain andmaintain your trust? (7) There are high rates of certain cancers in our local community, such as lungcancer, breast cancer, and prostate cancer—and some groups have higher rates than others (AfricanAmericans versus Whites). Talk about this problem. What are the factors that add to these high rates?What can be done to reduce cancer in our communities? (8) Discuss your views on each of the majorhealthcare systems in our local community. (9) Talk about how connected you think our community isto the healthcare systems. (10) What kind of relationship would you like to have with your healthcareprovider? Describe the desired relationship with your provider.2.6. Data AnalysesDescriptive statistics, including frequencies and means (standard deviations), were conductedto summarize sample characteristics. NVivo 11 was used to develop codes, and transcriptions weredouble coded by a second team member, who was trained by the Principal Investigator. Qualitative datawere analyzed using phenomenological content analysis [20], which describes the lived experiences ofparticipants, in the context of the five-stage framework [21]. In stage 1, transcriptions of each listeningtour session were verified for completeness and accuracy. In stage 2, the data were indexed intonodes and thematic chunks. A coding manual was used to identify themes and sub-themes related tocommunity trust for healthcare and research. In stage 3, two independent team members coded eachtranscription by applying standardized codes for themes and sub-themes. The codes were comparedfor reliability, and any discrepancies (these were minimal) were reviewed and resolved. We convergedthe data into charts containing the statements/comments/experiences shared within each thematic area.In stage 5, themes were clarified and mapped on to the levels of the SEM framework.Int. J. Environ. Res. Public Health 2019, 16, 3280 5 of 163. Results3.1. Participant Characteristics and Overall ThemesWe enrolled 130 participants across the listening tour stops. Participants self-identified as AfricanAmerican (80%), non-Hispanic White (17%), or “other” (3%). They were mostly older (between60–80 years of age), female (68%), had health insurance (97%), diagnosed with a chronic healthcondition (71%); 10% were deaf/hearing impaired.Overall, we identified a theme of low trust in the healthcare system due to current andpast experiences. Findings also revealed disparities by race/ethnicity and disability status.Positive healthcare experiences were described primarily by non-Hispanic White communitymembers—negative encounters were expressed overwhelmingly by African Americans and those whowere deaf/hearing impaired. There were many examples of the complexity of healthcare and researchdistrust in underserved populations. Themes revealed poignant differences in lived experiences amongAfrican Americans and deaf/hearing impaired participants, which impacted attitudes, beliefs, and trustfor healthcare institutions and biomedical research. Compared to non-Hispanic White participants,the expressed attitudes, concerns, and barriers to optimal health of the underserved participantsin this study revealed intrapersonal level barriers to trusting relationships with healthcare systems,medical providers, and researchers, such as concerns about the true goals of hospitals (i.e., makingmoney over patient care), beliefs that doctors receive compensation for prescribing certain medications,and concerns about biomedical research and participant exploitation. Tables 1–5 provide illustrativeexamples of narratives associated with distrust in the context of the SEM framework.3.2. IntrapersonalThemes at the intrapersonal level revealed dramatic differences in lived experiences and consequentbeliefs among participants, which impacted patient treatment-decisions, health behavior, and trust forbiomedical research. An overall theme of deep distrust emerged, reflected by individual characteristicssuch as beliefs and attitudes, perceived discrimination due to race/ethnicity or economic status,and personal experiences. As shown in Table 1, patients described negative experiences with healthcaresystems and medical providers, which reduced trust. Participant narratives highlighted deep distrustdue to beliefs that they were improperly medicated, intentionally misled, or not informed fullyabout possible harm. They also perceived substandard treatment due to their racial group or incomelevel, and concerns that they may lack the knowledge to advocate effectively for themselves andtheir families. Several participants detailed the process of being diagnosed with cancer, noting alack of physician empathy when informed initially about their condition, and recommendations forunnecessary surgery—prevented only by a second opinion. Thematic analysis also revealed significantdistrust related to research, which affected potential participation. Despite recognizing the importanceof research for new discoveries, medical advancements, medications, and participation for altruisticpurposes, participants expressed distrust for research. As illustrated by the representative statementsin Table 1, trust for medical research was damaged significantly in the African American communityyears ago, and has not been repaired. Many participants expressed concerns about enrolling in researchclinical trials testing new medications, although they viewed survey-based studies as acceptable. Theydiscussed the history of racist experiments and current exploitation fears (e.g. being, used as guineapigs) or that their health might be worsened by harmful drugs or placebo pills. A sub-theme of enhanceddistrust emerged due to failure to disseminate findings back to participants and the community.Int. J. Environ. Res. Public Health 2019, 16, 3280 6 of 16Table 1. Intrapersonal factors that influence trust for the healthcare system and/or research:Illustrative examples.Social Ecological Model Level Representative QuotesIntrapersonal—e.g., individualknowledge, attitudes, behavior,skills, health literacy, financialresources, values, expectations,and sociodemographics“I think they should give the same healthcare that they would give totheir parents or they would like someone to give to them. If you don’tcare for your parents, you sure aren’t gonna care for little darkskinned me.”“There is a whole population of my age group who is not showing up,who is not getting this information, who is not going to the doctor, whois not taking their kids to the doctor because of their distrust in thesystem or they don’t have time. It’s not that we do not want to go to thehospital, but there is a lack of access and a lack of information in ourcommunity. There is a lack of just connectedness in our community topull someone along. I don’t trust the healthcare system at all. I have tobe my own best advocate and my family’s advocate. I have to questionall the time.”“I think that as a person of color, the most important thing to me wasthat I felt I was getting the same standard of treatment as everyone else.When I went to go see the first oncologist, my sister went with me andmy sister questioned why I can’t get [a specific chemotherapy]? Well theoncologist said that if the cancer comes back they won’t have anythingto give me. And my sister was like “isn’t that the whole point is for thecancer not come back?” So I just felt like they were withholding a higherdose of chemo that would help me in the first run and : : : these are justpersonal things. So, I just go into every situation thinking of whether ornot I am getting at least the standard level of care or less than that.”“All the people around me are on 40–50 pills. This is too much medicine.They overmedicate people! Then they walk around like zombies, youknow, and that is a problem because doctors are the biggest drug dealersI know.”“I’m saying that they’re not telling you everything that you need toknow. They’re telling you only what they’re obligated to tell you.So there’s a lot of things they hold back. Just like I’m sure when they geta chart and they look at the chart, the age, the background, theoccupation : : : All this, I’m sure they make some kind of decision of howfar they wanna go with this person when compared to this person righthere whose net worth might be $300,000 a year. I think that person theymight really pay more attention to than this person who is getting publicassistance.”“I think research is good. But it depends on the research you’re doing.If you’re gonna talk over my head, what good is the research that youdid to benefit me? So for common people like us, we been fooled somany times. We’re tired.”“Black culture is afraid because for years, you know they used us asexperiments as you know years ago when they experimented in theearly years : : : and sometimes we still have that fear.”“I am tired of being pitied, you know. If I get a new doctor referral, I’mtired of being pitied on. I’m the same as you. I am not less than you.I am the same. That’s my goal just to be the same, no judgment.”Int. J. Environ. Res. Public Health 2019, 16, 3280 7 of 163.3. InterpersonalThemes at the interpersonal level revealed challenges with patient-provider communicationand culturally appropriate care (Table 2). Patients who reported positive experiences describedmedical providers who spent more time talking and listening to them. In contrast, many participantsdetailed adverse experiences with providers or medical teams. Themes also revealed significantsociodemographic differences in interpersonal patient-reported experiences that affected trust.Specifically, levels of distrust were markedly higher among African Americans and hearing/impairedparticipants, who were skeptical of provider intentions, behavior, and treatment decisions. Theyexpressed concern about providers giving them incorrect information, guessing versus diagnosingthe problem, and over-prescribing medications for “kick-backs” from the pharmaceutical industry;they also emphasized the need to hold doctors accountable. They described feeling rushed due tothe provider’s need to see as many patients as possible, poor verbal and non-verbal communicationincluding the use of medical (versus lay) terminology, limited eye contact, and a lack of empathy.A subtheme emerged regarding perceived discrimination and biases during clinical encounters. SomeAfrican American participants stated that providers had not “touched” them during their visit, whichwas perceived as attributable to their race/ethnicity. Deaf/hearing impaired participants describedcultural incompetence among medical teams, such as failing to direct communications to them (as thepatient), instead turning to their family members—including minor children—as if they were notpresent. Underserved participants indicated a preference and greater trust in culturally matched orexperienced providers, which they stated would increase trust.Table 2. Interpersonal factors that influence trust for the healthcare system and/or research:Illustrative examples.Social Ecological Model Level Representative QuotesInterpersonal—formal (medicalproviders, research staff) andinformal (social support systems)“…Because that’s important to have some cultural appropriatenessthere…Because there is an increased level of understanding ofperspective one is coming from. More knowledge about what reallygoes on within a particular type of family and lifestyles. A sense ofcomfort, because likeness kind of breeds some sense of trust. There’ssome sensitivity there and a greater depth of understanding.”“I would think that communication : : : researchers : : : to buildconfidence I think that communication is key. I think it’s very importantfor the doctors and researchers to communicate with the people andmake them : : : have good bedside manners : : : make them feel that theyare concerned and they do wanna help. I think that will bring a goodresponse from people and a willingness for people to want to partake.”“We have to hold the doctors accountable. The doctors give the wronginformation so it’s up to you to research the information that they giveyou to make a sound decision. And if you don’t make that decision thenthey just pass you on and experiment on you. I don’t want anexperiment; I want something that’s gonna help me.”“The doctors or the nurses, anyone who works in any of the hospitals orthe office, they need to understand the culture of what deaf peoplevalue. We need to educate them on a few things; awareness about howdeaf people think, how deaf people do things. Most people need a lot ofvisuals in the doctor’s office to explain things. If you have no visuals,it’s hard to understand. Many people’s doctors and nurses, they needmore education on how to understand our culture, our everyday lifeand what it’s like.”“I want to add that when you have a family member who knows thingsbefore the deaf patient does; that’s a big no. They need to provideinterpreters for the deaf person. No one should have to ask their familymember to explain what’s going on.”Int. J. Environ. Res. Public Health 2019, 16, 3280 8 of 163.4. InstitutionalThemes at the institutional level revealed challenges with healthcare as a system. The overarchingtheme was that healthcare is “big business” and that revenue generation, as compared to patient care,is of paramount importance. Challenges with access to the health systems, such as difficulty securingtimely appointments, the lack of availability of evening and weekend appointments, and difficultyparking and locating specific clinics within large hospital buildings were identified. The depth ofinstitutional factors associated with healthcare and research distrust was substantially greater amongboth racial minorities and deaf/hearing impaired participants (Table 3). While there was overallagreement that health systems are businesses, few White participants raised this as a trust-affectingconcern. In contrast, content analyses identified several themes of institutional distrust among AfricanAmericans. Participants expressed beliefs that doctors, hospitals, and pharmaceutical companies arecollaborating to “push” medications, even those of unknown effectiveness or with significant side effectprofiles. Participants also perceived that the quality of patient care varies based on insurance type,neighborhood/home address, age, and race/ethnicity, such that those who are insured by Medicaid,live in low-income areas, are older, or are African American receive lower quality care. Aspects ofthe hospital climate, particularly private hospitals, such as impersonal interactions, long wait-times,and limited discussion of patient support services also increased distrust and the feeling of beingunwelcome. Indeed, underserved participants were largely unaware of services such as patientnavigation, social work, and financial assistance programs. Our deaf/hearing impaired participantsexpressed strong dissatisfaction with the use of video remote interpreters (VRI) instead of ensuringthat live interpreters are available. Healthcare experiences were also adversely affected by the lackof institutional accommodations for deaf/hearing impaired patients, such as hiring qualified liveinterpreters, and training for providers and staff on how to use the VRI and cultural humility specificto this community.Table 3. Institutional-level factors that influence trust for the healthcare system and/or research:Illustrative examples.Social Ecological Model Level Representative QuotesInstitutional—organizationalcharacteristics, includinghospital/clinic climate, patientaccommodations and supportiveresources, financial policies,appointment scheduling, respectfor persons“We do not trust the system because simply the system cannot betrusted. It has moved from what it should be. Healthcare should be first;it became a business. The hospital is no more than a business right now.”“But I know people that go [to hospital] and they tell me that eventhough they accept high and low income people, you can tell which aregetting the high and the low treatment. At [hospital], they accept youbut they don’t give you the care that they’ll give somebody else. Theydon’t want you there. And they let it be known. The care is different.”“It does always seem to come back to money. My problem is the billingprocess. You can go and have treatment. And then you don’t get a billfor months later. And you don’t know what tests you had that requiredall these thousands of dollars. You’re not told up front. You don’t evenknow what all the tests are for. Or what they drew the blood for. It’s like,they just…are they doing this for research or what? But you end payingfor it because it’s part of a test that you didn’t know anything about.And the time in which you get the bill, you can’t connect the two.You just get a big bill in your name.”Int. J. Environ. Res. Public Health 2019, 16, 3280 9 of 16Table 3. Cont.Social Ecological Model Level Representative Quotes“Since my husband has been diagnosed with cancer, we have spent a lotof time in hospitals and being at different appointments. I think one ofmy issues is that my trust over this process has shaken a bit. Because thetime the time they spend with you is so short. Even when you’redealing with something that is a chronic illness. You take the time fromwork and other things that you have going on. They rush you out andthey don’t give you enough information and it shakes your trust in thehealthcare system. The better your insurance the better care you receive.It has shaken my trust in the healthcare system a little bit.”“When it comes to medical research the trust has been broken a longtime ago in the African American community. And I don’t know if thehealthcare system has done a great job at repairing that. And somepeople will say ok and not be aware of it, and I don’t that think that’sgood either. I think a person should be informed before they make adecision to be a part of research. I don’t think the healthcare system hasdone a great job to ease the minds of the African American communityaround research so that they will feel more comfortable to ask questionsand participate. And you want to support the global community doingthis research because good can come out of it, but people are scared to doit. I want to help others, but is this going to hurt me or my family in theprocess? Maybe more information about the benefits around researchand the benefits to the individuals could be communicated better.”“They bring me the VRI machine and then Ihave to say explain it again and again and again. So, most of the time,if I plan to go to the MRI [magnetic resonance imaging], I can’t because Ihave a Cochlear. But for example, MRI, CAT [computerized axialtomography] scan and any of those types of things, ultrasound. It’s adark room so you know the VRI can’t see me. So, how can they possiblyinterpret for me?”“They did not have an interpreter. They just wanted us to read their lipsand depending on me to read lips for him. They didn’t understand.They were having conversations, turning every which way and I can’tread their lips. When they are doing that and they’re using big words,big fancy words, that don’t mean anything to me. So, it doesn’t matter ifI’m hard of hearing. I still need to have a live person interpreter,not that VRI.3.5. CommunityWe also identified community level themes affecting trust (Table 4). These themes focused onthe built environment, businesses, accessibility to healthcare organizations, relationships betweenhealthcare systems and community-based organizations, and environmental injustices that may affecthealth. Underserved participants, who lived in disadvantaged neighborhoods or who would benefitfrom disability services, expressed trust-related factors almost exclusively. Specifically, environmentalexposures in low-income neighborhoods were perceived to contribute to the high prevalence ofhealth conditions, including cancer and lung disease. They described high levels of air pollution,trash dumping, and contaminated water. Participants also described a lack of access to nutritiousfoods, living in food deserts, and the prevalence of stores that would be unallowable in suburbancommunities. Access to healthcare also emerged as a theme, specifically the distance to medical clinicsin low-income areas, the inappropriate placement of private hospitals that do not accept Medicaid inpoor neighborhoods, and the lack of nearby trauma centers and emergency rooms. Also expressedwas the perception that seeking medical treatment in higher-income neighborhoods would resultInt. J. Environ. Res. Public Health 2019, 16, 3280 10 of 16in better healthcare. An additional theme focused on the lack of connection between healthcaresystems and communities with high need. Specifically, participants described a desire for healthsystem engagement with grassroots organizations to implement awareness and education programsin comfortable environments. A subtheme focused on the need for healthcare systems to work withcommunity organizations serving the deaf/hearing impaired community for education and training,and to identify culturally appropriate live interpreters.Table 4. Community-level factors that influence trust for the healthcare system and/or research:Illustrative examples.Social Ecological Model Level Representative QuotesCommunity—relationships amonginstitutions and communities (e.g.,built environment, neighborhoodqualities, housing, businesses,and transportation)“The community in which we live, we have certain soil that they dumpthings in around here in the neighborhood. I think that plays agreat…it’s a part of what type of cancer…the exposure to certain things iswhat I’m speaking of. I think that plays a big part of cancer, becausethey dump recycling here on [name] road. They allow people to put thatdump over there and the people were exposed to all the foul odor andall of that stuff, so it could not have been healthy for them breathingthis…they couldn’t sit on the front porch.”“Same kind of way with the air. You know, I remember when [company]was there by the lake. You knew the minute you hit [the city] becauseyou smelled all that stuff. Just imagine, you live right there where thatplant was, how those people’s lungs are.”“You know it’s the financial when you have like our race of peoplesituated in an area, that dumping, the water, everything is not whatwould be out in all those upper suburbs.”“If I hear that we live in a food desert one more time, because everyonelives in a food desert, because stores are just not in ourneighborhood…all these pundits on television that tell you to shop inour perimeter. That’s just hard to do.”“You keep sharing information about patient navigators, social workers,etc. That’s one of the things that seems to be missing within ourcommunity across the board. So there needs to be that type ofinformation readily disseminated, communicated and the communitymade aware of. So there needs to be some kind of vehicle or linkagewhen someone goes to the doctor that’s automatically communicated inlayman’s terms instead of on page five of the documents of what you’resigning. That’s the kind of thing that would empower a communitywhere things won’t have to go two years or five years where there couldbe some intervention prior to that so that people don’t get their hopesup about what {name of program] can do. That’s the type of informationthat needs to be communicated more in layman’s terms.”“So, one of things we should try to get to the communities back at somegrassroots-level programs like a Black barbershop outreach program.And aim it at Black men and disseminate information right in thebarbershop; that’s a man’s man cave, they go to the barbershop. We gotthe big clinic and sometimes facilities are too big or overwhelming.There’s a disconnect. We need to make sure we have those grassrootsvery solid [and] ongoing and sufficiently funded outreach andeducation programs. Because that’s where some of the empowermentwill come from.”Int. J. Environ. Res. Public Health 2019, 16, 3280 11 of 163.6. PolicyThe primary themes at the policy level were difficulty managing health insurance and the costof medical care (Table 5). Most participants had some form of insurance, yet described difficultyunderstanding covered services, and other specific policy matters. Again, themes demonstrated racialdisparities, such that African Americans expressed deep distrust for the policies set by insurancecompanies and associated governmental laws, whereas most White participants did not raise thisconcern. African Americans expressed concern about requirements for referrals to see specialists, thefinancial burden of repeated co-pays, unexplained policy changes that led to their main providersbecoming out-of-network, and that certain hospitals did not accept their insurance. Participants weredistrustful of high medical bills that arrive months post-visit that require unmanageable out-of-pocketcosts, and list services/tests that patients did not recall. Some participants questioned the limitedMedicare coverage for treatments and medications. For instance, one participant believed that socialsecurity benefit age requirements were based upon the government’s knowledge of the lower lifeexpectancy of some groups (i.e., patients would die before reaching the age to receive benefits to whichthey are entitled). Underserved deaf/hearing impaired participants talked a great deal about the needfor policy interventions to ensure capacity for live interpreters, including guidelines for medical schoolstudents in working with this population. Overall, deaf/hearing impaired patients believed that policychange would be necessary to improve healthcare experiences for patients with sensory disabilities.This would include flexible insurance coverage so that patients could select deaf/hearing impaired“friendly” providers to improve the quality of care. Finally, there was a significant theme among bothAfrican Americans and deaf/hearing impaired participants regarding the profit motivation of healthinsurance companies, rather than providing comprehensive healthcare that meets patient needs.Table 5. Policy-relevant factors that influence trust for the healthcare system and/or research:Illustrative examples.Social Ecological Model Level Representative QuotesPolicy—local, state, national,guidelines, recommendations,policies, and laws that influencehealthcare, research, access toresources, insurance“It is imperative that you have a primary care [physician] who followsyou regularly or that you check in with regularly. Because if you have aprimary care physician who is aware of your culture, race, and yourfamily history, it is a lot easier for them to write a justification to get aman screened at 30 [years old] versus older. More than likely they arenot going to put their neck on the line to give a prescription or an orderfor the test you need because you don’t meet that age criteria. Which ifyou have a primary care and they understand that part about you, it’s alot easier for them to say to an insurance company I know yourscreening guidelines are age 50, but this African American man has afamily history or his body is reacting this certain way that he needs tobypass the age of 45 for African Americans to 30.”“Doctors have their orders : : : they are working with pharmaceuticalcompanies there is legislation involved. There are all these differentmoving parts, you are sometimes a number in there and you have toadvocate for yourself and the way you learn to advocate for yourself isthrough your connections with other people in the community tosupport you.”“You have to listen to your body. And if something is wrong, you needto tell the doctor ‘look I need you to sit here and take time with me.’And if you don’t feel right with that doctor, go to another doctor.Sometimes it’s good to go to different doctors. I believe it shouldn’t haveto do with your insurance. Nobody should die because they don’t haveinsurance. Nobody should not get treatment because they don’t haveinsurance. That’s not right.”Int. J. Environ. Res. Public Health 2019, 16, 3280 12 of 16Table 5. Cont.Social Ecological Model Level Representative Quotes“I would like to know why people like me pay for insurance if they gotMedicare and I still have to pay a co-pay? And my Medicare went up.What’s the point of having insurance if it has to come out of yourpocket?”“And one of the problems was a lot of the medications had side effectsthat were worse than the conditions that they had. So, we saw a lot ofpeople actually die from the side effects they were getting. And nothingwould happen, because nothing was illegal.”“Well, that all depends on my insurance. I can’t pick my owndeaf-friendly doctor. I have to go through my insurance first and thatlimits who I can go to. I have to pick one off the list.”“I wish the insurance would be able to take care of the deaf better.”“I want to know about all the medical schools, their training to becomedoctors or nurses. Do they have a class to understand access todisabilities? I just want to know that if they a class, anyone to teachthem simple things or teach them deep.”4. DiscussionThe Case CCC CAB identified community trust as an important concern in the underservedcommunities surrounding the cancer center. This study applied the SEM framework to identifymultilevel factors that affect community residents’ experiences and perceptions around healthcareand research. Overall, themes revealed significant distrust for both healthcare and research,particularly among underserved community members. Intrapersonal themes associated withdistrust included individual beliefs and attitudes, perceived discrimination due to race/ethnicityor economic status, concerns about research exploitation, and personal experiences. Interpersonalfactors affecting trust reflected adverse experiences in the healthcare setting, concerns about providerbehavior, patient-provider communication challenges, perceived discrimination, and lack of culturalhumility. Institutional themes related to distrust included views that healthcare organizations aremotivated primarily by revenue generation rather than patient care, and inappropriate patientaccommodations. We also identified community-level themes such as limited health-related resources,community-to-health system disconnection, and challenges within the built environment. Themesrelated to policy were also identified, specifically related to the government and healthcare insurancecosts, policies, and laws. Underserved patients desired change in the healthcare system and howresearchers connect with members of the community.The observed multilevel racial differences in healthcare distrust found in the current studyare consistent with previous research. Guerrero et al. [22] found that African Americans reportedsubstantially lower healthcare trust compared to non-Hispanic Whites, even after adjusting forSES. A recent study found that African Americans expressed greater pharmaceutical company andgovernment distrust than Whites, as these institutions were viewed as profit-motivated and withquestionable interests [10]. Deepening our understanding of healthcare distrust is important foraddressing health disparities. Trust level and connectedness between community members andhealthcare systems may serve as underlying mechanisms for preventive health visits, cancer screening,medication adherence, and health behaviors. Most participants in the current study reported beingdiagnosed with a chronic medical condition. Previous research suggests that hesitation to accessgeneral medical care and/or treatment for chronic conditions is linked closely to healthcare distrust.Webb et al. [23] found that African American adults were less likely to have seen a doctor in the last sixmonths for a medical condition. Due to medical distrust, participants in the current study reportedInt. J. Environ. Res. Public Health 2019, 16, 3280 13 of 16limiting their engagement in healthcare systems unless absolutely needed (e.g., unable to managesymptoms, natural treatments unresponsive, etc.). Thus, understanding individual-level sources ofdistrust is important for quality improvement initiatives and improving healthcare experiences forgroups who experience health disparities.The current findings were also consistent with previous studies of racial/ethnic differences indistrust for research. The theme of skepticism expressed in the current study was rooted largely inknowledge of past exploitation by researchers and the government, rather than personal negativeexperiences. African Americans’ distrust for research is longstanding and pervasive, and reasonablyso [7]. Our findings extend this work by identifying specific conditions under which participants wereamenable to research participation. Participants reported greater distrust for biomedical (e.g., drug)studies relative to survey-based behavioral research. In part, this was due to concerns about exploitationand abuse (e.g., being used as guinea pigs, experimentation without consent), which are fears that havebeen noted in previous research [7,8]. However, a noteworthy theme across racial/ethnic groups in thecurrent study was recognition of the importance of research and its potential to benefit others. Previousresearch has reported a similar finding, such that African American males were indeed willing toparticipate in research, under specific circumstances (such as personal disease status) (5). Consistentwith previous research [24], we recommend culturally responsive approaches to increase researchparticipation among racial/ethnic minorities.Provider-patient challenges at the point of the clinical encounter also emerged as a significanttheme associated with distrust. Throughout the listening tour, participants expressed concernsregarding the limited amount of time allocated for appointments, inattentive providers, insufficienttreatment explanations, and provider bias due to their race/ethnicity or income. Specific communicationchallenges were identified among deaf/hearing impaired participants, such as use of the VRI versuslive interpreters, lack of visual aids during visits, and communication being directed at significantothers instead of the patient. Previous research on patient-provider relationships and underservedpopulations reported similar themes as they relate to both healthcare [25] and research participation [8].Systems factors, such as ensuring that patients see the same provider for regular care, have the potentialto increase trust [16].The application of the SEM extends the literature in this domain. This study demonstrates thatcommunity distrust is a highly complex problem that transcends individual-level factors. Themesdemonstrated that low trust and distrust also result from perceived inequities created and maintainedby institutions, community structural factors, and policy. Previous research applied the SEM to addressaccrual challenges to a genetic-epigenetic clinical trial, and demonstrated success [26]. However, littleprevious work has applied this framework to understand multilevel factors associated with healthcareand research distrust, identify racial/ethnic differences in these factors, or describe the perspectives ofdeaf/hearing impaired individuals. Participants identified ongoing concerns in their neighborhoodsthat increase risks for cardiovascular disease, such as exposure to environmental pollutants [27]—whichhave implications for trust. The findings from this study can inform institutional efforts to better servepatients and communities, and policy briefs (e.g., city, state, national) to achieve health equity.A primary strength of this study was the CBPR approach. CBPR allows for innovativeacademic-research partnerships, explores local knowledge and perceptions, and empowers communitystakeholders to act as agents who can investigate community-identified priorities using establishedresearch methods [28,29]. Partnering with community organizations increases the credibility of theproject, enhancing its usefulness by aligning it with what the community perceives as social andhealth goals, and provides an avenue for research participants who have varied skills, knowledge,and experiences to contribute to complex problems in complex situations [30]. Our team gatheredinformation highlighting the depth of community distrust in healthcare and research amongdisadvantaged populations, created a solid base of knowledge from community residents, generatedpotential avenues to make an impact, and disseminated the findings into the community. Studylimitations include the self-selection of participants in one geographic location, and that the age of theInt. J. Environ. Res. Public Health 2019, 16, 3280 14 of 16sample may not represent the experiences of young adults. Additional information might have beengenerated by structured interviews; however, our team made the decision to “listen” and resist thedesire to collect more than minimal data. Notwithstanding the limitations, this study contributes to theliterature on health disparities by using a community engagement approach to inform academic andhealthcare systems about the lived experiences of community residents regarding research participationand the quality of healthcare.5. ConclusionsIn conclusion, gaining healthcare and research trust in disenfranchised communities represents amarathon rather than a sprint. Our collaborative is committed to empowering communities to achieveoptimal health by both helping individuals find their voices and providing tangible recommendationsto decision makers within the healthcare system and research enterprises. Future research directionsinclude implementing and testing multilevel strategies to improve patient experiences with thehealthcare system and in biomedical research, and evaluating dissemination and implementationscience approaches to address health equity. Our ultimate goal is to integrate the knowledge gained inthis research to benefit communities.Supplementary Materials: Supplementary material can be found at http://www.mdpi.com/1660-4601/16/18/3280/s1.Author Contributions: Conceptualization, M.W.H., L.L.G., K.A., C.C., S.K., and V.J.M.; Methodology, M.W.H.,L.L.G., C.M.; Validation, M.W.H., V.J.M., and C.M.; Formal Analysis, M.W.H.; Investigation, M.W.H., C.M., V.J.M.,C.C., K.A., K.S., S.M., L.L.G.; Resources, M.W.H., L.L.G.; Data Curation, C.M.; Writing—Original Draft Preparation,M.W.H., C.M., V.J.M.; Writing—Review & Editing, M.W.H., C.M., V.J.M., C.C., K.A., L.L.G.; Visualization, M.W.H.,C.M., L.L.G.; Supervision, M.W.H., C.M.; Project Administration, C.M.; Funding Acquisition, M.W.H.Funding: This research was funded by Case Comprehensive Cancer Center institutional funds.Acknowledgments: We appreciate the Case Comprehensive Cancer Center Community Advisory Board, andthe Community Trust and Engagement Working Group for their efforts in this project. We are also indebted toour community partners Valerie James, Councilman Kevin Conwell, Jean Mendis, Amy Jenkins, Waverly Willis,and Angela Davis for assisting with participant recruitment and hosting listening tour sessions. We also thankthe research staff in the Tobacco, Obesity, and Oncology Laboratory for their assistance with data collection, andtranscriptions. Most importantly, we thank the participants in this study for sharing their experiences with us.Conflicts of Interest: The authors declare no conflict of interest.References1. Singh, G.K.; Jemal, A. Socioeconomic and Racial/Ethnic Disparities in Cancer Mortality, Incidence, andSurvival in the United States, 1950–2014: Over Six Decades of Changing Patterns and Widening Inequalities.J. Environ. Public Health 2017, 2819372. [CrossRef]2. Scott, A.; Chambers, D.; Goyder, E.; O’Cathain, A. Socioeconomic inequalities in mortality, morbidity anddiabetes management for adults with type 1 diabetes: A systematic review. 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