Characteristics of healthcare providers, healthcare systems, and patient strategies related to medical mistrust among black and African Americans

Abstract

Background

Black and African Americans experience an undue burden of disease and reduced life expectancy because of systemic racism. As a result, Black and African Americans report higher levels of mistrust of medical services, providers, and systems. The Model for Health Care Distrust posits that patient characteristics, including prior experiences, when combined with characteristics of providers and healthcare systems can result in distrust of healthcare. Mistrust is associated with lower utilization of preventive care services and poor health outcomes. This study aimed to identify characteristics of healthcare providers and systems related to mistrust and strategies Black patients use to mitigate mistrust.

Methods

This study was a sub-analysis of qualitative data collected on factors influencing decision-making around COVID-19 vaccination among Black and African American adults. Eighty-six participants (54% female, average age: 49) were recruited in Milwaukee, WI to participate in in-depth interviews. After an initial thematic analysis was complete, data coded to themes related to primary care, experiences with healthcare, and mistrust were thematically coded to the domains in the Model for Health Care Distrust.

Results

Most participants (67.4%) explicitly stated that they trust their primary care provider. 20% described only trusting some providers or trusting their provider half of the time. Patient characteristics related to mistrust included experiences of discrimination in healthcare and preferring natural medicine and wanting to discuss it as an option with their primary care provider. Healthcare provider characteristics including dismissiveness and treatment insistence were drivers for mistrust, while mutual respect and open communication and feeling like “more than just a number” supported patients’ trust. Characteristics of healthcare systems related to mistrust included healthcare capitalism and perceived hidden agendas and experimentation. As strategies to mitigate mistrust, patients described seeking doctors of the same race or gender, doctor shopping when mistrust arises, and empowering themselves to speak up via education and intuition.

Conclusions

Our findings align with the principles of anti-racist patient-centered care and shared decision making and support the application of this approach in primary care. This study lays the groundwork for primary care interventions focused on addressing medical mistrust among Black and African American patients.

Clinical trial number

Not applicable.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12875-025-02900-3.

Background

In the United States (US), Black and African Americans continue to experience racial disparities in health, with higher prevalences of cardio-vascular disease, asthma, cancer, obesity, hepatitis, and HIV/AIDS [1]. As a result, Black and African Americans have a lower life expectancy (72.8-years-old on average) than Asian, Hispanic/Latino and White Americans (84.5, 80.0, 77.5, respectively) [2]. This undue burden of disease and death is a result of historical and ongoing systemic racism, within and outside of healthcare [3, 4]. The influence of systemic racism on the health of Black and African Americans is complex and occurs at every socio-ecological level (meaning individual, community, and societal levels), ranging from interpersonal discrimination and violence to national policies like red-lining [3–6].

Within the context of healthcare, Black and African Americans are less likely than White Americans to have health insurance coverage and are more likely to live in areas with limited access to healthcare facilities [7–9]. Further complicating the navigation of healthcare systems, 24% of Black and African Americans have limited literacy compared to 9% of White Americans, which is a result of racial inequities in education [10, 11]. This literacy disparity is notable within healthcare, as most health information is written at or above a high school reading level [10]. High school reading levels make it harder for those with limited literacy to understand diagnoses or treatment options. Further driving health equities, Black and African Americans report experiencing bias, discrimination, and having negative interactions with their healthcare providers when seeking care [12–14].

Due to the pervasive nature of systemic racism, Black and African Americans report higher levels of mistrust of healthcare services, providers, and systems [14–16]. Medical mistrust has been defined as apprehension or suspicion towards a medication, service, or provider that derives from concerns that the provider or healthcare system is not acting in their best interest and may have malicious intent [17–19]. The Model of Health Care Distrust posits that patient characteristics, including prior experiences, when combined with characteristics of providers and healthcare systems, can result in healthcare related distrust [20]. This in turn impacts adherence, utilization, quality of care, and health behavior, ultimately affecting patients’ health status [20, 21].

Medical mistrust is strongly associated with lower utilization of preventive care services, satisfaction with care, and poor health outcomes [20, 21]. Preventive care services, such as primary care, are critical to disease detection, prevention, and treatment. To begin to address health disparities among Black and African Americans, it is necessary to improve utilization of and satisfaction with primary care; however, this cannot be achieved without consideration of and intervention on medical mistrust.

To date, there is a paucity of qualitative research that aims to understand the context and lived experience of medical mistrust [21]. This qualitative study aimed to fill this gap in the literature by elucidating medical mistrust among 86 Black and African American adults in Milwaukee, WI. Specifically, we sought to identify characteristics of healthcare providers and systems related to mistrust and strategies patients use to mitigate mistrust from the perspective of Black and African Americans. The results of this study will provide critical insight into the context of medical mistrust that may help identify areas for future interventions.

Methods

Study description

This study was a sub analysis of data collected as part of a larger study that aimed to understand factors influencing decision-making around COVID-19 vaccination among Black and African American adults in Milwaukee, WI [22]. The larger study was implemented through a community-academic partnership with a federally-qualified health center and under the guidance of a Community Advisory Board (CAB). The CAB members provided essential input into the development of the interview guide, the study approach, participant recruitment, and dissemination of study findings.

Data collection

Between March and October 2022, we conducted in-depth interviews with 86 Black or African American residents of Milwaukee. This large qualitative sample size was recruited to achieve thematic sufficiency, and ensure we had enough data to conduct rigorous analysis, and capture diversity of experiences [23]. Inclusion criteria required individuals self-identify as Black or African American, be age 18 or older, and live in Milwaukee, WI. We used purposive sampling to obtain diversity in age, gender, and vaccination status. As such, there were times when enrollment was limited to individuals of a certain demographic to achieve adequate representation. Participants were recruited through a multi-pronged approach. First, the study’s CAB was instrumental in connecting the study team to community organizations, events, and informal leaders and networks. The CAB was comprised of Milwaukee residents who were passionate about public health and had strong connections to Black communities, allowing for broad community-based recruitment. We also partnered with several area health clinics and community organizations to host tables and distribute information. Additionally, we used participant referrals and social media postings (e.g., Facebook) to increase awareness of the study. The study was designed with a goal of recruiting between 75 and 100 participants; we ended at 86 through ongoing team discussions about thematic analysis of primary themes around COVID vaccination experiences and opinions.

Interviews were conducted by four study team members who were experienced in in-depth interviewing. All received training in conducting the interviews for this study and received ongoing feedback on interviewing by the study PI. The interview guide was developed collaboratively with the CAB and included discussions around healthcare engagement; positive and negative experiences in healthcare; community and social support; medical mistrust; healthcare treatment preferences; and community and social engagement. Throughout data collection, the study team met weekly to debrief and reflect on data collection. We kept study team memos during this process to aid in interpretation and contextualization of data, helping us track emerging patterns and nuances.

Interviews were conducted at trusted community-based organizations and on-site at study team offices and took approximately 60 min to complete. A sample interview guide can be found in Supplement 1. All participants provided Verbal consent was used to reduced barriers for participation and limit formal collection of participants names to overcome potential mistrust. informed consent prior to the start of the interview and then completed a brief demographic questionnaire with basic questions to describe the sample (i.e. gender, age, Race/Ethnicity, income). Participants were compensated $50 for their time. All study protocols were approved by the Institutional Review Board at the Medical College of Wisconsin.

Model of health care distrust

The Model of Health Care Distrust (Armstrong et al., 2006) used for this sub-analysis [20]. We chose this model because it aligns with our focus on patient-provider-system dynamics, as this model is a conceptual framework that describes the relationship between key factors associated with health status. This model has three primary domains: patient characteristics, physician characteristics, and healthcare system characteristics [20]. Patient characteristics could include sociodemographics or past negative experience with a dismissive doctor could fuel distrust. Physician characteristics may include providers training, knowledge, and experience that inform patient-provider interactions that may lead to distrust. Lastly, healthcare system characteristics could include elements of policy or structure that influence patients’ experience accessing healthcare. Factors within these domains can result in healthcare related distrust, which is associated with intermediate factors—such as adherence, healthcare utilization, and health behavior—and ultimately health status [20]. Specifically, patients arrive to the clinical environment with various characteristics that may drive or inform feelings of distrust. Their interaction with the provider and healthcare system, combined with their existing characteristics, beliefs, and experiences, can result in distrust. This distrust may reduce adherence, healthcare utilization, and healthy behaviors, which can then impact health outcomes.

Analytic procedures

Interviews were recorded and transcribed verbatim, checked for accuracy by the study coordinator, and coded using MAXQDA software (VERBI Software, Berlin, Germany). We used a team-based approach to coding, wherein study team members collaboratively reviewed transcripts, discussed potential codes and code definitions, and created a single, agreed upon codebook [24]. The codebook included inductive codes identified from the literature along with deductive codes identified collaboratively with the CAB or through a review of the literature on COVID-19 vaccination driving factors. Specifically, inductive codes emerged from participants’ thoughts and stories (i.e. ‘Holistic and Natural Medicine’), while deductive codes, like ‘Access Challenges’ came from prior research. The final codebook was applied to all interviews twice, by separate team members, to enhance the reliability of the code application.

To determine each patient’s trust in their doctors, we reviewed responses to “how much they trusted doctors to keep their best interests in mind?”. Patients’ responses included yes, no, and mixed responses. For a few patients (n = 3), it was not clear whether they trusted their doctors. Data were then analyzed using thematic analysis to identify patterns, generate descriptive accounts of the data, and develop themes [25]. This analysis resulted in the following themes: Primary Care, Trust in Providers, Health/Healthcare Experiences in the Black Community, and Discrimination and Mistreatment in Healthcare. These themes were distinct from themes and data specific to COVID-19, as participants were asked about their primary care provider, experiences in healthcare, and trust in their provider(s) and healthcare separately from questions about the pandemic. For this sub analysis, data from these themes were then thematically analyzed and mapped to the domains of the Model of Health Care Distrust [20]. For example, the data within and overarching theme of ‘Experiences of Discrimination in Healthcare” aligned with patient-level factors in the Model. While patient strategies are not a domain of this model, they arose as a prominent theme related to the model and thus were included in our results.

Trustworthiness and credibility

To ensure the trustworthiness and credibility of our analysis, we used a team-based approach, which helped to ensure consistency in code application. The coding and the initial discussion of potential themes included diverse members of the team including community representatives and research assistants who conducted the interviews, in addition to the principal investigators on the team.

Reflexivity

Our team was diverse in race, educational background and training, socioeconomic status, gender, and role on the study, which helped to facilitate rich discussions of the data and minimize the influence of individual bias.

Results

A total of 86 people were interviewed for this study. Sample characteristics can be found in Table 1. Participants were predominantly female, most had received the COVID vaccine, and two-thirds stated that they trusted their healthcare provider(s). Only eight participants explicitly stated that they did not trust their healthcare provider(s). Most of the participants who did not express full trust in their providers described either trusting some of their providers or only trusting providers 50% of the time. A summary of our findings within the Model of Health Care Distrust can be found in Fig. 1. In brief, we found: two patient factors (Experiences of Discrimination in Healthcare and Preferences for Natural and Homeopathic medicine); three healthcare provider characteristics (Dismissiveness and Treatment Insistence, Mutual Respect and Open Communication, and the patient feeling like “More Than Just a Number”); two healthcare system characteristics (Healthcare Capitalism and Hidden Agendas and Experimentation); and three strategies patients leverage to overcome or avoid feelings of mistrust (Finding Doctors of Similar Demographics, Doctor Shopping, and Empowering Themselves).

Table 1.

Sample characteristics (N = 86)

	n (%)
Race
Black	83 (96.5)
Black and Hispanic/Latino	2 (02.3)
Black and Native American	1 (1.2)
Gender
Female	47 (54.7)
Male	39 (45.3)
Age m(SD)	49 (13.91)
COVID Vaccine
Yes	47 (54.7)
No	39 (45.3)
Trust in Healthcare Provider(s)
Yes	57 (66.3)
No	8 (9.3)
“50/50”	18 (20.9)
Unclear	3 (3.5)

Fig. 1.

Results from Thematic Analysis Mapped to Model of Health Care Distrust. Findings from a secondary thematic analysis of data coded to themes related to mistrust and primary care applied to the domains of the Model of Health Care Distrust. This figure also introduces patient strategies in the relationship between characteristics of patients, healthcare providers, and healthcare systems related to mistrust and health outcomes

Patient factors

The Patient Factors domain of the Model of Health Care Distrust pertains to characteristics and factors that can drive or contribute to feelings of mistrust towards healthcare services, providers, and systems [20]. Two themes arose as patient-level factors associated with the extent to which participants trusted their healthcare providers: Experiences of Discrimination in Healthcare and Preferences for Natural and Homeopathic Medicine (Fig. 1). For the most part, participants who reported not trusting or only somewhat trusting their providers described experiences of discrimination when seeking healthcare. When asked about a time they felt mistreated or discriminated against, participants described instances when they felt like they received no or insufficient care because of their race. A few participants stated they knew it was because of their race because they had White friends who did receive the treatment or service they requested. Other participants who shared experiences of discrimination described times when the discrimination was less explicit, but still evident to them as patients. Lastly, participants also shared that they knew discrimination in healthcare was a common experience among Black and African Americans in their communities, driving mistrust for themselves and others.

I think I’m being discriminated against, put it that way, as far as a Black woman. They give the White ladies some pills, but they won’t get me any. And I usually don’t take pills, but if I need a pill, I’m gonna let you know. One of my friends told me that she got some [medication], and she’s White. [W]e go to the same doctor. How’d he give you something [and not me?] (AAV021, F, 69).

[The provider] told me “Well, I’m not gonna write down nothing so you can get disability.” And I was so devastated. [….] I had just lost my job, after 9 and ½ years, I had just lost my mother. All of this happened at the same time. She claimed that I came to get social security disability. I feel like that because, like I said, they categorize you and she acted like I was coming to her because I was Black, and I didn’t want to work, and I wanted to get a check from the government because I wasn’t working. And that just devasted me because I’ve been working since, I was 16. [….] They try to play you like you crazy. So, that’s why I don’t really trust a lot of the healthcare workers. (AAV029, F, 60)

I have heard major experiences of African Americans, children being roughly treated, diagnosed, mismanagement of medicine, many conversations or many situations of hearing bad situations for African Americans. (AAV053, M, 51)

Additionally, some participants shared that they trusted both natural and western medicine and often preferring natural medicine as a primary treatment plan. These participants described treating themselves via home remedies (drinking broth, isolating to “sweat it out,” etc.) before turning to medications or scheduling an appointment with their primary care provider. These participants also explained believing that their bodies are built to fight illness and viewed homeopathic medicine as a means to facilitate their bodies’ natural immune response. Most of the participants who preferred natural medicine were not against western medicine; however, they were concerned that their doctors might not listen to them and/or would cycle them through medications that would not work. A few participants also discussed how natural remedies are inherited and shared within families and across Black and African American communities. Overall, participants had a positive perception of natural medicine, believing it was how some of their older family members stayed healthy and the best primary tactic to overcome illness.

Am I 100% anti-meds, all homeopathic treatments? No. I believe in a good mix though. We know some things work. We know when you got a cold, something about that chicken broth is just really good and healing. That is proven. [….] The problem is when you’re still having the issue, and they’re just pushing more and more and more and more and more instead of looking at other alternative treatments. (AAV070, F, 32)

I would say that a lot of Black people just don’t want to go to the doctor. Just don’t want to go. [….] A lot of what our people believe in is the passed down remedies that come from family to family. I mean from Grandma’s way of taking care or Grandad’s way of okay, you got a cold. You got a little rash. Put some of this on it. You gotta sore throat, do this for that. Instead of saying well, hey. I may have a throat infection where you can barely speak but I’m thinking maybe hot tea or something can handle this. (AAV046, F, 49)

Healthcare provider characteristics and factors

This domain of the Model of Health Care Distrust pertains to characteristics of healthcare providers that may result in feelings of mistrust when combined with healthcare systems characteristics and patient factors [20]. Characteristics of healthcare providers can encompass provider sociodemographics, behaviors, and interpersonal experiences. Three themes arose specific to healthcare provider characteristics and factors. The first theme reflected how dismissiveness and treatment insistence contributed to mistrust of their providers. In contrast, we also identified how mutual respect and open communication and the patient feeling like “more than just a number” could facilitate trust.

When describing why they did not trust their healthcare providers, participants described instances where they felt they were not listened to or they felt pressured to do something they did not want to. Specifically, participants recalled times when they would direct their healthcare provider to a concern and would be told that they are “fine” or redirected to an unrelated issue.

Misunderstood is one thing. I’ve had some times they didn’t listen. They would more or less look at it from their point of view and I kept telling them. I used to tell them. I’d say, “Why don’t you listen to what I’m saying?” And they would of course listen. But then again, their response told me. They didn’t wanna listen. You know. “No. Listen to me.” So, I’ve been through that. (AAV054, M, 72)

Similarly, participants cited times they had concerns and refused testing or treatment for themselves and their children but faced insistence from their provider to comply. These instances included providers dismissing their preference for natural remedies, referring patients to many specialists, and ignoring patients’ negative history with certain tests or medications.

[The doctor] wants me to take an MRI, and I told him it was a bad experience. And we just got to arguing, and I had a panic attack, and I felt that I shouldn’t fear my doctor. [….] This man is trying to change and break me down. [….] I hate that doctors can use their authority so well. (AAV011, M, 45)

My whole leg is swollen [and I] have difficulty walking. [The provider] wanted to give me injections. No, I [don’t want] those. [….] I’m like, “Can I get a scooter?” “Well, it’s going to cost $5,500.” I’m like, “You’re not paying for it. My insurance is going to pay for this.” So, she denied me. [The insurance company] would agree with me, but when it goes back to her, “She’s standing up, walking, pushing the chair.” What else can I do? (AAV023, F, 60)

In contrast, participants had positive feelings towards primary care and healthcare providers who offered mutual respect and open communication. Universally, participants expressed enjoying and wanting to have conversations with their primary care and other healthcare providers. Participants who stated they trusted their provider described feeling respected and listened to and noted that their providers were responsive to their concerns or requests. This was true for patients regardless of treatment preference (natural and homeopathic medicine versus western medicine).

If they’re not informing me of certain procedures or which way they gonna do things, giving me options or letting me know what the repercussions or the advantages are, I don’t really wanna deal with the healthcare that way. (AAV003, M, 59)

I trust [my primary care provider] because she’s always wanting to run a test. If I tell her something’s wrong, she’s gonna set up– “I’m gonna set up you to be tested for that” or “I’m gonna set up an x-ray for that.” (AAV016, F, 60).

Participants who liked and trusted their primary care providers described that they felt like “more than just a number” to their provider. They explained that they felt respected and important when their provider would call them to follow-up, accommodate their appointment requests, and express care about their health. Conversely, participants cited feeling like just any other patient when they encountered short appointments and minimal conversation or felt like their provider was reading a script.

[My primary care providers] motivate me to take them because I don’t like taking pills. I’ve got a problem with pills […] and they know me so well. [.…] I mean they will call me. I will be on my day, just enjoying my day and they will call and check on me. I’m in Goodwill one day, the phone ring, I’m like, “Hello?”, “This is doctor such and such.” I’m like, “Girl, what you calling me for?” She’s like are you taking them pills, or how the medicine work, your blood pressure getting up with it. (AAV085, F, 53)

I will say one time for example, I said I need to gain some weight I’m too thin. And [my primary care provider] was like no, don’t do that. This is what you need to do. You can’t say he don’t care. He didn’t ignore the statement. He made the effort to give me pamphlets and teach me about body mass and that I was okay. It’s all in my head. So yeah, I definitely trust them. They gave me the accurate input and made sure he put me first. (AAV043, F, 33)

[My primary care doctor] really cares about my health. He has showed me over the years that he’s got my back and that he cares about my health, and he cares about me as a person. (AAV004, F, 64)

Healthcare system characteristics

This domain of the Model of Health Care Distrust pertains to characteristics of healthcare systems, that when combined with characteristics of healthcare providers and patient factors, can foster feelings of mistrust [20]. These characteristics can include perceptions of the culture and motivations of healthcare and aspects of the healthcare system that drive inequities. Within the context of healthcare systems, two themes arose as drivers of mistrust: Healthcare Capitalism and Hidden Agendas and Experimentation. Primarily, participants worried or held beliefs that the healthcare system (hospitals, doctors, pharmaceutical companies) is heavily motivated by money, resulting in subpar care and excessive use of medications. Participants stated that for doctors and healthcare systems to make money, they had to be sick. Therefore, they believed that there was monetary motivation to keep them sick, either indirectly through noncomprehensive care or directly via medication. Some participants said that being on state health insurance negatively impacted their care because it paid less than private. They expressed concern that this resulted in neglectful care or the reallocation of supplies or resources to patients with private insurance.

If you think of the whole scheme of things, a doctor does do a job. If you’re 100% healthy, there’s no need for him. Not saying that he would withhold information to treat you, but he might prolong it for as long as he could. Like I said, it’s all a business. They want to make sure that they get they money and if you’re 100% healthy, they won’t have a job. (AAV063, M, 36)

Well, the people who get the government assistance, Section Eight, all that type of stuff, you get the bottom of the barrel treatment, right? You really don’t get that much help. So it’s like okay, they might have somebody over here that’s got the top-of-the-line insurance, somebody like a white man or somebody that has some money. And he might actually only have a 20% chance of living versus this young Black guy, who’s young and healthy. The same thing could be wrong, and he might have a higher chance of living but they’re gonna go fuck with him more than they’re gonna mess the Black guy pretty much, because of his insurance, because it isn’t up there. (AAV066, M, 29)

Less commonly but still noteworthy, some participants described not trusting healthcare systems because they feared hidden agendas and experimentation. Examples included having unlicensed physicians working in the prison system, withholding care from potential organ donors, and the government using healthcare to eliminate groups of people quickly. Most frequently, participants worried that their doctor was prescribing them medication or recommending vaccines to experiment on them. While only a few participants shared these beliefs, the disclosure of these concerns demonstrates the depth of mistrust in the healthcare system held by some patients.

Because I can go one day to the doctor, maybe three months later, you’re giving me some medicine, but it’s supposed to be for the same thing that I’m coming to you about, so why do I have to change to a different medicine? That makes me feel like you’re experimenting on me. You’re experimenting to try to find you another way to make a different pill. (AAV005, M, 54)

I took my kids to the hospital one time for an asthma issue. And it wasn’t my first time ever going for asthma. [….] [T]he doctor wanted to give my daughter a shot to instantly make her better. “Well, it’s gonna help her breathe.” […] but I said, “I don’t want her to take this vaccine that’s gonna instantly make her do anything.” I said, “We’ve been here multiple times, and you never offered that shot, so we’re not gonna do it today. Let’s go with the plan that we always done. Do the 60-minute treatment.” [….] She was forcing to get this shot. [….] So, to me, I was looking at it like, “I’ve never heard you all come out with this shot to instantly make them, an asthmatic person just be better. She’s not no test monkey. You all probably just came out with this. And you’re not gonna use it on her.” (AAV086, M, 37).

Patient strategies to mitigate mistrust

Lastly, three themes arose as strategies patients use to mitigate mistrust in their healthcare providers and the healthcare system: Finding Doctors of Similar Demographics, Doctor Shopping, and Empowering Themselves through Self-Education and Trusting Intuition. As a first step, some participants describe intentionally seeking out primary care and other healthcare providers who were also Black or African American and/or who were the same gender. They described feeling more comfortable with these doctors, as they could relate to them.

But again, for me, I’m looking for an African American doctor. How can I relate [to a white doctor]? If I’m a snake, I know snake shit. If I’m a duck, I do duck shit. I don’t give a fuck how many studies you do. You ain’t walked or experienced my life. So, I [want] an African American doctor who lives the life of [an] African American man. (AAV053, M ,51)

Most frequently, participants described having or being willing to “doctor shop”, either in response to poor treatment, discrimination, and/or to receive a certain diagnosis or treatment. These participants expressed avoiding mistrust in their healthcare providers by not hesitating to find another provider if necessary.

I get rid of them when I can’t trust them. (AAV067, F, 70)

It’d be time for me to move around, because if you’re telling me something that I don’t agree with, then I’m just not going to [trust you]. [….] [I]f I don’t trust the doctor, if I believe they’re trying to put their beliefs on me, I just don’t go back to them. (AAV084, F, 34)

In combination with the other two strategies, participants also shared that they formed trust in their relationship with their primary care and other healthcare providers by empowering themselves. Empowering themselves encompassed advocating for themselves, trusting their intuition, and educating themselves. Participants described being very outspoken and honest by sharing everything with their providers and speaking up when they felt mistreated or did not understand something.

I trust them. I mean, I trust them because I want to be honest with a doctor. I’m not gonna lie and say I got this, and I don’t have it just to get something. Or I’m not gonna cover anything up or anything like that. (AAV086, M, 37)

Additionally, participants stated they do research on their own about their concerns to help them advocate for themselves.

Because I diagnosed myself with acid reflux. I had the GI done where they put you to sleep and run that. And he said, “Oh, you’ve just got a little stomach irritation.” No. I have acid reflux. I Googled it. I researched it. I knew. I diagnosed myself. (AAV016, F, 60)

In addition to these dual strategies to feel empowered, participants also explained that they listened to themselves and how they felt about their provider to determine how much they trusted them. They stated that they could sense when not to trust someone. It was important that they listened to their own intuition to determine when they needed to advocate for themselves or switch providers.

Well, for the most part, I think I’ve got that third eye. I can just about look at somebody’s eyes and tell when they’re telling me a lie or don’t have my best interest at heart. You can look in somebody’s eyes and tell when they don’t. (AAV067, F, 70)

Discussion

This qualitative study aimed to identify characteristics of healthcare providers and systems associated with mistrust and strategies patients’ use to mitigate mistrust in a large qualitative sample of Black and African American adults. While most participants trusted their primary care providers, our study still uncovered recurring themes tied to mistrust towards healthcare providers and healthcare systems. Additionally, we found three strategies patients used to overcome feelings of mistrust. The findings from this study provide critical insight necessary to leverage the identified characteristics and strategies as intervention points to help overcome medical mistrust in primary care.

Patient characteristics and strategies to overcome mistrust demonstrate the importance of patient empowerment and choice in the context of healthcare. For patient factors related to mistrust, we found that participants who did not fully trust their providers had previously experienced discrimination. This is a consistent finding in the field of mistrust among Black and African Americans [12–14, 26]. These experiences indicate the need for systematic changes, such as integrating principles of anti-racism into medical training, healthcare staff recruitment, and healthcare systems [12–14, 26]. Anti-racism is the principle of promoting racial equality by identifying and opposing racism in persons, systems, and policies [27, 28]. Anti-racism in medicine is supported by organizations like the Association of American Medical Colleges, which has a repository of anti-racism resources for individuals, organizations, and the community [29]. Our study also found that some participants preferred natural and homeopathic medicine, which aligns with existing research among Black and African Americans [30, 31]. Notably, our participants did not desire natural medicine in lieu of western medicine, but as a treatment option to be considered with their primary care providers to feel more agency in their care.

Participants also described using strategies to overcome their mistrust of a provider or the healthcare system. These included selective strategies, such as finding a primary care provider with similar lived experience and doctor shopping when mistrust occurs. The third strategy participants leveraged was self-empowerment via education and trusting their intuition to advocate and speak up for themselves in healthcare settings. Our patient-level findings support the need for the enrollment, matriculation and graduation, and employment of diverse primary care providers. Despite constituting 12% of the US population, only around 7% of primary care physician and 8% of nurse practitioners identified as Black or African American in 2021 [32–35]. Although the proportion of Black and African American students who matriculate into medical schools has increased, the attrition rate among these students is twice that of their White counterparts [36, 37]. Previous research has shown that representative healthcare providers improves patient care and health outcomes, in part because of shared lived experience described by participants in our study [38, 39]. Additionally, our results indicate that interventions that target patient empowerment may help address medical mistrust among Black and African Americans. Previous research has identified two key components to patient empowerment that improve health outcomes: increased self-efficacy and sense of control over one’s health [40]. Interventions targeting these components of patient empowerment may also help increase trust among Black and African American primary care patients.

Healthcare provider characteristics were related to interpersonal experiences participants had with their primary care and specialty providers. This was reflected when participants described feeling dismissed, not listened to, and pressured into certain procedures or care by their providers, resulting in mistrust towards that provider, and often providers in general. This theme highlights the importance of utilizing a patient-centered approach to healthcare and engaging techniques like shared decision making [41–43]. There is preliminary evidence that leveraging tools, such as patient decision aids, as part of patient care helps patients feel heard and, in turn, increase trust [44]. The other themes detected in this domain were related to feeling trustful and liking their primary care provider. In contrast, participants also described mutual respect and open communication and feeling like more than just a number as key aspects of trust-building interactions with their healthcare providers. These findings align with previous research that found that the interpersonal skills and emotional intelligence of providers is associated with trust among patients [45–47]. At a system-level, primary care providers face substantial challenges to building rapport and trust with patients. Specifically, there is limited time allotted for each patient, competing and increasing demands, and documentation burden that all impact providers’ ability to allocate energy and time to developing relationships with patients [48–50]. These pressures can hinder trust-building, as patients sense providers’ divided attention and may feel rushed or dismissed as a result.

Characteristics of healthcare systems associated with mistrust could be considered “conspiratorial beliefs” about the motivations and goals of the system to keep people sick to make money and use patients for experimentation. Conspiracy beliefs are a documented subcomponent of medical mistrust that arise as a protective or defensive response and can be culturally transmitted [21, 51, 52]. These conspiratorial beliefs are part of a cognitive style to find meaning, explain causes, and reduce feelings of powerlessness [53]. These beliefs are bolstered by historical instances of oppression and abuse, such as the Tuskegee Syphilis Study, which resulted in a valid and logical cultural suspiciousness of healthcare systems [54]. Conspiratorial beliefs are not uncommon nor exclusively held by Black and African Americans, an estimated half of Americans believe in at least one conspiracy theory [55]. Although conspiracy beliefs do not always directly impact healthcare decisions among those who hold them, it is critical to acknowledge and address the role of these beliefs as a subcomponent of mistrust [56]. Previous research has demonstrated the importance of the patient-provider relationship and patient-centered care in overcoming or circumventing the impact of conspiratorial beliefs about the healthcare system on mistrust [57, 58]. Echoing our provider findings, open communication could counter these system-level suspicions.

This study has notable strengths. Primarily, we were able to recruit a large sample of Black and African American adults in Milwaukee. This allows us to include a wide variety of perspectives in our analysis and reporting. While qualitative research does not aim to be generalizable, the inclusion of 86 participants provides a comprehensive understanding of medical mistrust among this population. Additionally, the use of the Model of Health Care Distrust in the analysis and reporting is a strength of this study. This Model provided critical structure, based on the theoretical domains, that helped inform analysis and comprehensive, contextualized reporting of results.

This study is not without limitations. Primarily, this was a secondary analysis of data collected for a study focused on COVID-19 vaccinations among Black and African Americans in Milwaukee, WI. While none of the data analyzed for this study pertained to COVID-19 and data utilized for our analyses was specific to how participants felt about the primary care and healthcare systems, it is possible that participants were primed to approach their feelings of mistrust within the context of COVID-19. Additionally, as this was a secondary analysis, not all of the content of the interview guide was heavily specifically focused on medical mistrust. Lastly, this study only interviewed Black and African American people living in Milwaukee, WI. While qualitative research does not aim to be generalizable, it is important to provide the context that Milwaukee is one of the most segregated cities in the US, which may be related to our findings [59].

Conclusions

Our study identified key characteristics of Black and African American patients, healthcare providers, and healthcare systems related to mistrust of primary care providers and ancillary services. We also identified strategies patients employed to overcome or avoid feelings of mistrust. Our results indicate the importance of anti-racism and using a patient-centered approach during primary care visits to build rapport and leveraging shared decision-making techniques to educate and empower patients. Future research should further explore characteristics of healthcare providers and systems related to mistrust within primary care using an intersectional lens to provide further context to medical mistrust in this population. This study lays the groundwork for primary care interventions focused on addressing medical mistrust among Black and African American patients, such as provider training about mistrust and patient-centered care, and patient empowerment strategies, such as the roles that can by played by peer support specialists.

Electronic supplementary material

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Abbreviations

US

United States

CAB

Community Advisory Board

Author contributions

KG and KQ wrote the main text, KG and KQ conceptualized research question, JK, YA, JW, and KQ conceptualized and designed the study, KG and KQ acquired and analyzed data, and KG, JK, YA, JW, and KG drafted the work or substantively revised it. All authors reviewed the manuscript.

Funding

This study was funded by the National Institute on Minority Health and Health Disparities (R01MD016372-01, MPIs: Quinn, Kelly, Amrikhanian).

Data availability

The datasets used and/or analyzed during the current study are available from the principal investigator (Dr. Katherine Quinn, kaquinn@mcw.edu) on reasonable request.

Declarations

Ethical approval

This study was conducted in full compliance with the Declaration of Helsinki and the Belmont Report and was approved by the Medical College of Wisconsin Institute Review Board.

Consent to participate

Every human participant provided their informed consent.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.