Proceedings of a Workshop—in Brief

The Roles of Trust and Health Literacy in Achieving Health Equity: Clinical Settings

Proceedings of a Workshop—in Brief

INTRODUCTION

On September 22, 2022, the National Academies of Sciences, Engineering, and Medicine’s Roundtable on Health Literacy hosted the first of three public workshops in a series titled “The Roles of Trust and Health Literacy in Achieving Health Equity.” The first workshop in the series explored how using health literacy best practices in clinical settings might impact trust in health care institutions, and how that, in turn, might positively impact health equity.¹ The following two workshops focused on similar questions but in different contexts: rather than clinical settings, they focused on public health institutions and community settings.

Lisa Fitzpatrick, a planning committee member and an epidemiologist and professorial lecturer at George Washington University’s Milken Institute School of Public Health and founder and chief executive officer of Grapevine Health, began her opening remarks by noting that the need for greater trust in health care has emerged as a central theme in the nation’s conversations about transforming the health care delivery system to become more focused on the needs and concerns of patients and communities. Trust, said Fitzpatrick, is critical for engaging in health care and preventive health behaviors in that trust affects the willingness to engage in care and accept medical advice. While indexes such as medication adherence, clinic no-show rates, and hospital admissions can reflect trust or mistrust, health care has yet to standardize and adopt measures of trust. There are efforts under way to prioritize trust in health care, and she noted the work that the American Board of Internal Medicine Foundation has been undertaking toward that end.

Fitzpatrick’s work has included a focus on the relationship between health literacy and trust. In that work, she has heard countless stories about patients second guessing clinical advice and believing advice from friends over health care professionals because of their doctor’s inability to speak in plain language and be understandable. As one individual told her, “If I don’t understand you, I don’t trust you.” Fitzpatrick’s message to health care providers and organizations attending the workshops was this: “The language of health literacy is often communicated as a patient deficit, as if to say a

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patient’s health is failing because they do not understand something. But speaking in plain language is our responsibility, and addressing health literacy is our work to do, for we are responsible for ensuring that people understand what we say, and that builds trust.”

DEFINING TRUST

The workshop’s first session explored definitions of trust from the perspectives of patient and provider experiences. Addressing the question of what trust looks like, Reggie Tucker-Seeley, vice president for health equity at ZERO–The End of Prostate Cancer, said that as a gay Black man, he often has to decide between finding a Black physician or a gay physician, since it is hard to find someone who is both. Having a trustworthy physician is critical with regard to how he can bring his full self to a health care encounter. Nikki Montgomery, program and communications manager for Family Voices, said trust is a two-way issue: she has to trust the clinician and the clinician needs to trust her and trust the experience that she brings to an encounter. To highlight the bidirectionality of trust, Nikki shared a personal story about a time that her child, who she noted is medically complex and disabled, presented with a concerning cough to a physician. The physician was dismissive of Nikki’s concerns and continued to insist the cough was normal, rather than trusting Nikki’s knowledge and experience of her child and his medical history.

Kevin Dedner, founder and chief executive officer of Hurdle Health, also said that trust has to be bidirectional, with the clinician trusting that the patient’s experiences are real and valid. For him, trust means being able to bring his whole self and all his experiences into any clinical setting, whether that is with a primary care physician or a behavioral health specialist. A trustworthy relationship builds from humility, particularly around cultural humility. He noted that, in his view, health care institutions and providers should acknowledge that it is not possible to become competent about someone else’s culture—rather than focusing on cultural competence, he suggests a shift toward cultural humility and responsiveness, which means recognizing that someone else’s cultural experiences are true and valid. Melissa Simon, professor of obstetrics and gynecology at Northwestern University Feinberg School of Medicine, agreed that cultural humility and cultural responsiveness “are really the way to go.”

Dedner said an important signal for him that a clinician is trustworthy is if they legitimize him as a person and truly try to understand him. As a Black man who was in therapy for depression, the mannerisms and body language his therapists displayed, as well as the dismissive nature of their conversations, was a negative sign. He noted that half of all individuals from ethnic minority groups terminate therapy prematurely because they do not feel heard.

Simon indicated that the nation is in a crisis with respect to engendering trust in the health care delivery system, which shows up in the pervasive health inequities across every medical condition. For her as both a provider and patient, building trust begins at the very first point of contact with a health care provider, team, clinic, or system. She noted that many people come to a clinical encounter with a history of having experienced discrimination or blatant racism, highlighting the importance of unpacking those experiences and addressing them in the patient-provider encounter through deep listening and ensuring that everyone feels heard and valued by every member of a health care team.

In her field of obstetrics and gynecology, Simon noted, there is a long, dark history of engendering distrust, including experimenting on enslaved women, that clinicians today have to acknowledge. Acknowledging the history of biases and mistreatment, particularly of people of color, and not assuming that history is irrelevant because the health care system today is more respectful is important, added Dedner. The reason is that families pass on stories that become collective community knowledge about how health care institutions function, he said. For Simon, this means that every single clinical encounter, regardless of who the patient is, is going to get full, deep listening on her part. At the same time, she has had encounters where the patient’s prior experiences, or those of family members or friends, are a barrier to building trust. In one instance, a woman who was having a difficult delivery that could endanger her child wanted

to be left alone because she had suffered terrible abuse at the hands of the medical system. Simon’s response was to pause, listen deeply to the patient and unpack that history, explain slowly and carefully what needed to be done to save the baby, and let the patient make the decision to proceed on her timeframe. Fitzpatrick noted that there are times that require fast decisions, but the worst time to build trust is during a crisis. This points to the lesson that building trust is a long-term process, one that providers need to work at consistently.

Turning to the connection between health literacy and trust, Montgomery said there is a huge connection in that it is not possible to be equal decision makers and equal partners in health care without the capacity to share and use information in the same way. To her, that means a key feature of trust is making information accessible to people. Too often, medically complex patients and their families have to become trained in the language of health care so they can navigate the system, but health care is not being trained in the language the patients and families use. The result is an unequal and problematic power dynamic that affects trust. As an example, she has seen hospitals provide discharge packets for pediatric patients that are called homegoing packets, not realizing that “homegoing” in some African American communities refers to planning a funeral.

Confusing equality—treating every patient the same regardless of who they are and what their history is—with equity—meeting each patient where they are and recognizing the knowledge they bring to an encounter—can interfere with trust, said Tucker-Seeley. His approach to his interactions with health care has been to communicate to a provider that he has a background in public health and brings not only a population-level perspective to the encounter but also his personal knowledge and experience. His organization, for example, equips patients with knowledge about prostate cancer that they need to navigate their clinical encounters and that they need to convey to their clinicians, but they also bring their personal experience with prostate cancer.

In terms of what makes a health care system trustworthy, Dedner said effort is important. He acknowledged that it might not be reasonable to expect every team or an institution to “get it right every time”; however, he noted that it should be expected that teams and systems will give people the opportunity to share their expectations, provide them with the space to be heard, engage in deep listening, and to do so earnestly. Simon agreed with Dedner, noting that being worthy of trust is in the eyes of the beholder. In her case, that means that just because she speaks Spanish and is a Latina does not mean that she will gain every Latina patient’s trust automatically. “That is important because we all need to build trust with everyone, regardless of who they are and all their intersecting identities,” said Simon.

From Montgomery’s perspective, trust looks like transparency, and transparency requires collecting and reporting on certain aspects of care, including trust, that health systems are not collecting today. “Establishing that kind of transparency would enable me to build trust at a system level,” she said. For Tucker-Seeley, trust in the health care system requires engagement with communities that goes beyond token engagement because it is currently fashionable. He sees this in conversations about health equity and health disparities, where systems talk about it but where action beyond collecting data to substantiate the problem may not follow.

When asked how they would measure trust if trust became a health care quality measure, Tucker-Seeley thought that some measure of engagement might be useful, and Montgomery suggested adding a measure about trust to the Hospital Consumer Assessment of Healthcare Providers and Systems survey² that measures patients’ perceptions of the care they receive. She also thought that provider notes could yield some answers about how clinicians trust their patients.

Regardless of the measure, said Tucker-Seeley, patients have to be at the table to help develop what the assessment will be. Simon elaborated that nothing should be measured around trust unless it is what patients and communities

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want to focus on; it should first be confirmed that they want to be measured with respect to trust and want to measure health system and health care team with respect to trust. According to Simon, one aspect of measuring trust is transparency regarding clearly stated organization values and beliefs and how an organization plans to achieve trust and achieve optimal care for every patient.

In terms of addressing disparities and equity, Tucker-Seeley said there is no space for people and organizations concerned about this issue to come together and talk about best practices or even what health equity would look like. Again, he said, this goes back to the problem of systems having initial conversations but not taking subsequent action, as well as to not asking what people and communities think health equity should look like. In terms of being heard, Montgomery said that patients need to exercise their voice regardless of the power dynamic, and if the provider or health system pushes back on that, then find another provider or health system. While that might interfere with continuity of care, she believes it is important to find the right fit so that trust can develop.

RESEARCH ON HEALTH LITERACY’S RELATIONSHIP TO TRUST

Michael Paasche-Orlow, professor of medicine at Tufts University School of Medicine presented on the state of the research literature on the relationship between health literacy and trust. Having reviewed over 70 health and public health studies relating to trust and health information, interpersonal trust, organizational trust, and societal trust, he brought forward exemplar studies to exhibit the state of the literature.

To begin, he introduced the concept of critical appraisal, an important feature of health literacy and how people engage with information. Critical appraisal is the process of carefully and systematically assessing information to judge its trustworthiness, value, and relevance in a particular context. One study, for example, found that higher levels of health literacy make it more likely that people will find medical information through medical websites and less likely that they will get their health information from television, or from “social media, blogs, or celebrity websites” (Chen et al., 2018), suggesting that high health literacy enables critical appraisal skills. Another recent study found that people with higher coronavirus-specific health literacy levels had the greatest level of trust in health professionals and health authorities and considered social media as the least trustworthy information source (De Gani et al., 2022).

Interpersonal trust, said Paasche-Orlow, is the domain relevant to clinical encounters. Research in this area has produced mixed results. One study, for example, found that health literacy was “significantly and positively associated with trust in physicians and in the health care system after adjusting for respondents’ sociodemographic characteristics” (Tsai et al., 2018), and other studies found that people with lower health literacy had less trust in their physicians, though there was no association with institutional distrust (DeWalt et al., 2007; Gupta et al., 2014). In contrast, research has also found that lower health literacy was associated with greater levels of physician trust and better medication adherence (White et al., 2013).

Paasche-Orlow also cited research showing that lower health literacy was associated with decreased trust in the health system. At the same time, this study found that higher levels of health literacy were also associated with lower levels of trust, in part because, as Bertram et al. (2021) stated, those individuals had “high expectations about the quality [of care], which the health care system might not be able to provide,” leading to disappointment. The same study found that people in the middle tier of health literacy had the highest degree of trust (Bertram et al., 2021).

Research at the societal level, said Paasche-Orlow, has shown that health literacy was not a significant factor associated with vaccine hesitancy (Arvanitis et al., 2021; Willis et al., 2021). However, a study from his group that is under review found that health literacy was an important mediator of trust in vaccines, racial disparities in vaccine competence, and disparities in vaccine uptake (Hurstak et al., forthcoming).

There are issues with interpreting the results of this research, said Paasche-Orlow, in that these studies have

examined different populations in different settings and at different times in an evolving information climate. He also noted that people tend to trust the information that confirms prior beliefs, something that research has not fully captured. In addition, the outcomes of these studies are subjective, in part because the domains of both trust and health literacy are poorly captured and quantified. The definition of health literacy has even evolved from one that stressed an individual’s ability to make appropriate decisions, where appropriate is a subjective concept, to one that emphasizes the ability to make informed decisions. In short, said Paasche-Orlow, the research literature on health literacy and trust is currently unclear.

One criticism he has regarding trust and health care more broadly concerns the idea that trust is an explanatory paradigm for racial disparities in health care. The basic underlying principle in much of the literature, said Paasche-Orlow, is that minoritized racial and ethnic groups simply do not trust the health care system and that this is a reflection on the Tuskegee syphilis studies conducted in the 1930s on Black men. He noted that though historical context is certainly relevant, it should not be used to suggest that these issues are not still present; people experience major disparities in public health, housing, banking, the carceral system, education, and health care in their communities today, and directly experience discrimination in health care themselves. They see a lack of transparency in health care and health care research so they do not participate in studies, which results in studies that may not be generalizable to all groups and research that may not help all populations and that exacerbates disparities in health care (Scharff et al., 2010).

Given all this, the challenge according to Paasche-Orlow is to learn how to shift the discourse to a focus on how to be trustworthy. To do so, he suggests, will require health care providers and the health care system at large to demonstrate a set of qualities that show they are worthy of trust. These are captured in Figure 1. Being nonjudgmental, he noted, is particularly important, and he suggested using restorative justice circles as a means of exposing clinicians to conversations that can help them be nonjudgmental.

Concluding his remarks, Paasche-Orlow said that health literacy can be part of the path to trustworthiness by helping people develop critical appraisal skills, simplifying patient-directed materials, and teaching clinicians to use plain language, which can increase trust, instead of jargon, which decreases trustworthiness. Last, instead of forcing patients to develop navigation skills to deal with organizational complexity, health care systems should work to improve their organizational health literacy.

POLICY IMPLICATIONS

In the workshop’s final session, moderator Michael Wolf, associate vice chair for research and professor of medical and social sciences at Northwestern University Feinberg School of Medicine, had the day’s speakers discuss possible suggested action items and policy steps, as well as potential roles for health literacy, that would help clinicians and health systems improve trust and improve health equity. Tucker-Seeley raised the issue of how patients are expected to be experts in navigating the “very uncoordinated” health care system, even though most patients are not experts and need assistance. His organization addresses this problem by creating as many tools as possible to help prostate cancer patients with navigation and demonstrating that the organization is a trustworthy partner in this endeavor. One approach he suggested is to provide anticipatory guidance before the patient’s journey through the health system begins and

help them develop questions that they need answering in an upcoming clinical visit.

Montgomery said she thinks of health literacy as a form of accessibility and that measuring health literacy is not needed. As an example, she said she does not need to know how well her son, who has physical disabilities, can mount a staircase. She needs to know if there is a ramp he can use to access the building. “Measuring someone’s health literacy is putting them through a gauntlet when ultimately, we should be building materials, building tools, building communications and pathways that do not require them to have to have a certain skill level,” said Montgomery, “and we should make this universal.”

Dedner provided an example from his early days in public health running a state HIV/AIDS program in which he did not practice health literacy. The program was making changes to its formulary, and he wrote a letter to send to the program’s clients. For the 3 weeks after he sent out this letter, he was flooded with phone calls from clients who could not understand what this lifesaving communication was trying to tell them because he had written the letter at too high of a reading level. As a result, he had to spend the next several months correcting this wrong that he had made despite knowing better. “Even though we have known for quite a while due to health literacy research that it is important to be clear, we could all probably go within our own health systems and find great examples of where we are still not doing this right,” said Dedner.

In terms of initiatives to address trust and health literacy, Simon had three ideas. Something that she and her colleagues are doing at her institution is designing and testing trust-building questions that all perinatal care providers would ask in every patient’s first perinatal care visit. This could help alleviate the common problem of a pregnant person leaving that first visit with a pile of information and the expectation that they would understand and absorb complex concepts such as genetic testing. Instead, the provider would ask their patient about their expectations for their pregnancy and what their hopes, dreams, and fears are.

Her second idea was to develop and use one-page checklists, something aviation does well as a safety measure, that are specific for each condition for which a patient might seek care. What this does, said Simon, is impart agency to the patient and their loved one or caregiver because if a box is not checked, then it is easier for the patient, regardless of their level of health literacy, to ask their provider why a box is not checked in a way that helps evolve the conversation between patient and provider. She noted that the checklists she has developed also include contact numbers on the back of the page that can help patients deal with navigation challenges. Her third idea, specific to the labor facility, is a checklist used whenever a patient needs an unplanned cesarean section. Using this checklist creates a quick time out to provide time to have a conversation with the patient, nurse, provider, anesthesiologist, and other care team members about why the patient needs a cesarean section at that moment. “We answer questions with the patient right there and we are doing it as a team.”

In terms of what a health literacy intervention in the context of trust would look like, Paasche-Orlow said the right approach depends on whether the problem is at the patient and family level, provider or clinic level, or system level. As an example of an intervention at the provider level, Paasche-Orlow noted how it is common today for a patient to tell their provider that they read something on a website about their condition. A typical provider reaction is to get defensive and be dismissive. A better approach, one that would help build a trusting relationship, would be for the provider to let the patient know how excited they are that the patient is interested in their own health and to perhaps look at the website together. The key at any level, he said, is that shutting down people’s access to information is not an approach that builds trust or demonstrates trustworthiness.

Dedner said that his organization uses an evidence-based intervention that helps all therapists improve their cultural humility and cultural responsiveness (Day-Vines et al., 2018). While this intervention is specific for counselors and licensed clinical social workers, there are lessons that health care could get from this work. He noted that cultural humility training should be part of a core curriculum for everyone in the health care

workforce. Tucker-Seeley added that it is important for providers of all types to be aware that discrimination is a reality for many people of color as they try to navigate the health care delivery system and that it contributes to trust issues.

Montgomery pointed to the expectation that patients should trust their doctors, which does not hold true for all patients in all communities, yet she has seen patients shamed because they do not automatically trust their physician or the health care system. In fact, she does not trust health care, and it is not a reasonable expectation for people who are currently experiencing harm to trust the health care system. At the same time, said Simon, providers are socialized through medical training to not trust certain types of patients, particularly those who may not want to do what the provider wants, and those mental biases persist. This is why working on being nonjudgmental, listening, and understanding where the patient is coming from are so important for building trust, added Paasche-Orlow.

To conclude the workshop, Wolf first noted that the Agency for Healthcare Research and Quality website has resources that try to address health literacy at the health care system level and help systems become more health literate.³ He then asked each speaker for one idea that would achieve trust through a health literacy lens. Dedner would like to add health literacy practices to daily activities and reinforce that through policy that supports institutions and encourages institutions to embed these practices. Montgomery said that plain language and communicating plainly to people is a good place to start building trust. Simon’s idea was to diversify the workforce at all levels, including leadership, and Tucker-Seeley would make sure that every provider understands the difference between equity and equality.

Paasche-Orlow expressed agreement with the ideas the other speakers suggested in response to Wolf’s closing question, then added that he would like health care to massively improve how communication happens, something that is imperative for empowering patients. He also reiterated his call for working on being nonjudgmental, listening, and understanding where the patient is coming from to build trust.

REFERENCES

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DISCLAIMER This Proceedings of a Workshop—in Brief has been prepared by JOE ALPER and M. KELLY MCHUGH as a factual summary of what occurred at the meeting. The statements made are those of the rapporteurs or individual workshop participants and do not necessarily represent the views of all workshop participants; the planning committee; or the National Academies of Sciences, Engineering, and Medicine.

REVIEWERS To ensure that it meets institutional standards for quality and objectivity, this Proceedings of a Workshop—in Brief was reviewed by JOANNE G. SCHWARTZBERG, Accreditation Council for Graduate Medical Education. LESLIE SIM, National Academies of Sciences, Engineering, and Medicine served as the review coordinator.

STAFF M. KELLY MCHUGH, ROSE MARIE MARTINEZ, and CRYSTI PARK

SPONSORS This workshop was partially supported by AbbVie, Inc., the California Dental Association, the Department of Health and Human Services, Eli Lilly and Company, Health Literacy Media, Health Literacy Partners, Merck & Co., Inc., the National Institutes of Health, Northwell Health, and Pfizer Inc.

For additional information regarding the workshop, visit https://www.nationalacademies.org/our-work/the-roles-of-trust-and-health-literacy-in-achieving-health-equity-a-workshop-series#sectionSponsors.

Suggested citation: National Academies of Sciences, Engineering, and Medicine. 2023. The roles of trust and health literacy in achieving health equity: Clinical settings: Proceedings of a workshop—in brief. Washington, DC: The National Academies Press. https://doi.org/10.17226/26888.

Health and Medicine Division Copyright 2023 by the National Academy of Sciences. All rights reserved.